Hi all. I have been taking liothyronine for about 8 years now. Initially recommended by Dr Skinner, and prescribed via my GP. I have just received a letter today to say that it is no longer prescribed by primary care and that I need to be seen by an Endo. Just hours later I got a call from the my local hospital (Derby) asking me to attend on Monday. It isn’t convenient for me, so I have refused. But I’m wary anyway.
Does anyone have any experience of derby hospitals endo unit (my previous experience hasn’t been great!) and also has anyone got any useful advice on my rights (if any). I’ve a feeling they will refuse to keep the prescription ongoing.
Many thanks all
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Struggs
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Good luck, it's bad enough that you are having your T3 prescription challenged, you should not have to fight for the right to receive this medication, it's bad enough having a thyroid problem without having to struggle to get the hormones you need.
Do you know what I find really concerning about this whole T3 debacle is that no one going forward is going to be prescribed T3 any more, even if they desperately need it.
It is colossal malpractice that patients who have been well on this hormone are now having it withdrawn even though that goes against NHS guidelines.
But what really worries me is that those who need it in the future are also going to be denied, in some cases, life saving treatment.
I wonder what is really going on, surely the NHS could fund some production of necessary drugs that many in the population need, maybe a little less research into other conditions and a bit more spent on things that are required right now, let's face it a cure for a disease you might get in the future is of absolutely no help if you die of a thyroid related illness beforehand. Is it so difficult to produce T3 and T4 in our own country if we cannot source it from a cheap pharmaceutical company? this is a genuine question, I'm not a biochemist, but if Germany can produce it for 30 euro's for 100 tablets, why can't we do the same?
Well, the reason diseases are researched and drugs go into testing, is that treatment and cures for them ARE required now ie that person A hasn't developed the disease doesn't negate the fact that persons B to Z might have. The cost of new drug development, testing and licensing is £multi-millions or more; although a simple generic presumably less so. (However, Concordia for instance, used the simple fact of a shift to a new manufacting premises as being validation for its dramatic T3 price hike). But there's no need to set up further new manufacturing; all that is required is that manufacturers outside the UK apply for their product to be licensed for use here.
I'm not trying to be argumentative, I do appreciate the need for research into new treatments and drugs, however the NHS perhaps should refuse to pay Concordia's increase in price which they justify because they saw fit to build a new manufacturing plant.
As far as I am aware T3 and T4 are both generic and do not need to be linked to a brand.
Maybe the powers that be in the NHS could ask the German manufacturers to supply them with liothyronine they seem to be able to produce it at a much smaller cost than the likes of Concordia, let market forces dictate the price. We are constantly being told that competition will drive down prices so let's see if the same idea can be applied to essential medication, I suspect if Concordia, and any other manufacturer who currently makes liothyronine for the UK market, had real competition their price would drop dramatically
The reason for Struggs post was to seek support and comfort for her thyroid issues. We are aware that research is done in other fields . However , our focus is to offer help on this forum relevant to thyroid problems and it’s treatment .
I know it is scandalous what UK pharmacies can be charged for what is ESSENTIAL medication for some people, I recently asked at my local pharmacy what one month's supply of T3 would cost on a private prescription and when the pharmacist looked it up she said it would be £360, I almost fell over!!
The NHS needs to get its act together and look for alternative suppliers if that is what they are expected to pay for T3, instead of taking people off a necessary medication.
Good luck I hope you are feeling well soon and you can obtain your T3.
I too have been taking for a few years!.. But last month I was told by GP that they won't prescribe again, luckily I am seeing my endo next month, as I only have two weeks supply left, and will see what he recommends , will update on the outcome , sorry can't advise on endo, as I'm in Essex
And this is a link to an article in The Endocrinologist, Written by Mark Vanderpump, former president of the BTA in which he clearly states that people who are stable on T3 should not be taken off it as clinical need should come before financial considerations.
He also says that the cost of treating the problems arising from withdrawal of T3 could well outweigh any savings.
Hi there is a campaign by TUK ITT and other groups to ensure T3 is available to patients. The various groups have info on how to approach a deprescription review. Go well prepared with your medical history and why you don’t do well on T4, read your CCG policy because they are not following NHS policy. You can record and openly and take a friend to make notes.
I have been trying to make same point, if right medication was provided people wouldnt need benefits and pip they could work and also not be using nhs as much, it is crazy that so called intelligent doctors etc cannot realise this. They give out antidepressents and dont treat real issues. Give us B12. Give us proper thyroid meds and we can contribute some much more to society and enjoy life now. How much money would be saved to then spend on research into new treatments if needed.
I hope your husband can now enjoy or at least have some quality of life.
Rmoc south September 27th meeting had new liothyronine guidelines on it. These ignore the bta advice and pervert the Nhs consultation response. I fear T3 folk are in for stormy weather.
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