I'm seeing on other sites post and comments about some issues with 'a' batche of concordia brand T3. I know many don't get on with Teva brand of T4 or T3 and some have yellow carded.
My worry is that I am getting 'vibes' and I am reminded of the issue with NDT - 'rogue material getting onto the market in the guise of NDT' being negatively publicised to be ten found it was not NDT at all. Yet it triggered deep mistrust with NDT resulting in it's widespread reduction in use.
Could this be same old tactics? One brand being yellow carded is one thing. It is the brand. More than one brand being yellow carded is it likely to be seen as the medication itself? Thereby justifying what the T4 only advocates have been saying for the last few years? Is the 'evidence' to support the rubbish spouted over the last few years - i.e. T3 difficult to administer - spikes, lack of benefit, now being put in place. Introducing water soluble T3 - making it more difficult to administer and hugely more expensive if partly disposed of. And if it is not working for us - because the 'formula' has changed...and we don't like it and yellow card it, is this not building a case for the removal of T3 from issue?
I would put nothing past those faceless cowards trying to rid us of this medication.
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UrsaP
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Personally I find the Teva brand of T4 to be relatively ineffective. My fT4 levels have increased a significant amount after recieving a prescription of 25+50mcg of a different brand (Wockhardt), as the Teva 75mcg were out of stock. I'm definitely planning on avoiding Teva if at all possible by calling pharmacies beforehand and asking what brand(s) they have available.
The main reason the NHS is blocking T3 is because of the huge price hike that pharmaceutical companies and lack of competition have enabled. If there were a reduction in its price to previous levels, I'm sure the NHS/NICE would suddenly change their minds on the issue.
I tend to disagree that it is about the price. And that NHS/NICEwould change there stance if the cost came down. There is a cost bill in place that impacts much more than T3, yet it is not being implemented because of one CMA investigation. Makes no sense.
I have felt from the beginning that the issue is anything but cost.
My warning bells were ringing loudly when the NHSCC were pushing us into dealing with the cost at the first Consultation Face to Face, when the NHS have never questioned the price hiking themselves, Concordia themselves has put that in writing. I'm pretty sure their lawyers would not allow that if it were not true. NHS/DoH have allowed, and probably encouraged the price hiking.
In my view the price hiking is an excuse to push t3 right off the market. As they effectively did with NDT by introducing 'rogue' material under the guise of NDT, onto the market in the 60's. After the damage done, it was found it was not NDT at all. No thyroid hormone at all, just iodine. There seems to be an increasing reporting of T3 medication not 'working' as well - bad batch? Or something similar to the 60's?
The two things the NHSCC made a point of pushing was cost and lack of evidence of benefit.
1. They allow the price hiking themselves. Why have they not done something about it?
2. They had by the time of the consultation already withdrawn T3 from the majority of patients -eradicating 'evidence of benefit'. Certainly my benefit on T3, for the last 11 years, has not been recorded anywhere to be considered.
3. The Cost bill amendment is sitting reductant - why? Why is this seemingly dependent on one CMA investigation? It was promised in 2018. Stalling tactics. Why? Too many questions of 'why' unanswered. Why are the NHS not pushing for it to be implemented?
Julie Wood, at this same first F2F meeting said an already 'postponed' meeting with JH was her priority. Only a matter of weeks later, when I asked her at another F2F, had she managed to reorganise this meeting, she sharply shot me down telling me not to rely on that, it was unlikely to happen. In my opinion it never was. Everything she has said so far appears to be lip service. She is a front for the NHS to keep us at bay!
The whole public involvement in this situation is a tick box exercise, I'm pretty convinced that decisions have been made long before the public were involved.
The ITT campaign and the responses to the Consultation resulted in T3 being kept on prescription, in theory. As it is still being 'banned' around the country. I spoke to my GP (I am still getting mine for now) he said 'when it is banned' not 'if' but 'when'. Language can be a great giveaway! Also look a the errors made by Sir Bruce Keogh in the reporting on the consultation to the Board at the end of Nov 17. Where he - National Medical Director - stated to the board and on live public feed, that T3 was just an expensive version of T4. He then went not to compound this statement with further rubbish. The current NMD told me this was a slight error of language? Really. There has been no retraction of Keogh's statement.
I feel that the real issue is in the actual benefit of T3, not just for thyroid, but in helping many others, with diabetes, heart and mental health issues, and with pregnancy issues. And maybe reducing the likelihood of developing some of these and likely other conditions. There is no money in well people.
We need to be looking into the deeper motives of this move.
I agree with you, price has always been a useful smokescreen. The routine, or any, primary care prescribing of T3 has always been out of favour - or at least has been in all the years since I first found out about it, and even way back then, had to threaten a formal complaint against my GP who was refusing to prescribe it "because it is only ever prescribed for use in ICUs as a treatment for myxoedema crisis." As you infer, there are deeper motives driving this bizarre situation, not price.
Yes the adversity to T3 has been and inherent issue - seeing as T4 was coming to the for when it was discovered. Hence the need to remove any sign of it - the move on NDT? And I can see history and tactics repeating itself here with T3.
Yes agree, and it's partly why I feel that the free-access yellow card system is both flawed, and open to manipulation for devious purposes. I strongly believe that patient fora should stop urging members to complete yellow cards for T3, for both reasons. For instance, if the "problems" experienced by some people with TEVA are due to the inclusion of acacia amongst the excipients (I'm not saying that is the issue, but just as an example), and "some" but not all people have an intolerance to it, that's definitely not a fault of the active ingredient, nor even of the inactive ones; but simply a fact. Reporting an individual's intolerance to an excipient within a scheme designed to allow reporting of "suspected adverse drug reactions tomedicines" is misleading, and skews any inference that might be gleaned from the data collected. So if you have a body wanting to discredit T3, the yellow card scheme is all grist to its mill.
I largely agree. I think there is no doubt that some medics don’t like T3 because it is potent and they see it as unpredictable. It makes your blood results go wappy so they lose all the security they find in the numbers. (God forbid they should respond to symptoms!)
I think they lack the time, effort and understanding to help people titrate their dose. Ironically, they often also don’t understand the fine art of titrating T4 doses either. Hence the number of undertreated miserable hypos.
I hate to think it’s all a conspiracy and that if the price came down it wouldn’t be more readily available - but I agree some GPs/endos would still avoid it and deny it to people.
I do wonder though - what would happen if the prices of T3 and T4 seesawed? If T3 was tuppence and T4 was £300 a packet, what would happen then... 🤸🏿♀️
Good point re the price of T4 but doubt that will happen, at least not until all alternatives have been wiped off the table.
Does T3 make bloods go wappy? I don't think it did with me? Though it did take about 18 months for me to find the right balance of adrenal support, T3, Vitamins etc. That seemed to be more to do with the poor adrenal function at the time, rather than T3. My bloods were all over the place before I started on T3. More settled since.
It makes the tests more difficult to interpret than being on T4 alone as there are 2 factors to take into account rather than one on combination therapy. It tends to send the TSH right down and it’s hard to say from the T3 result how much is converted T4 and how much is the T3 you are taking. Monotherapy makes things simpler - but simpler doesn’t necessarily make you well! 🤸🏿♀️
T4 mono certainly did not make me well. And my TSH dropped right down, but before I started T3 so not sure about that. But the problem being in the training and lack of research to better understand the result. If we could get the Drs to stop obsessing about TSH and take into account the way the patient feels it would help. I know I felt much better when my TSH is nearer <0.1 than 8, or 17.
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