The NHS has the numbers of patients taking Levo and every other medication.
Let us accept that the NHS knows how many patients are prescribed levothyroxine.
Let us accept that the NHS knows how many levothyroxine prescriptions are dispensed.
But what they do NOT have is the number taking any particular formulation, or combination of levothyroxine formulations.
Nor do they know how many are taking the levothyroxine. We have some members who continue to be prescribed levothyroxine, maybe even collect it from pharmacies, but actually take desiccated thyroid or liothyronine. They just don't want to burn their boats by telling their GP to no longer prescribe the levothyroxine.
What else NHS does not have (despite levothyroxine being one of the very commonly prescribed medication, given to millions of people) is whether or not they are well on it.
I have grown heartily sick of companies demanding reviews - often multiple times.
But I wouldn't object to an email asking how well I had done on a prescribed medicine. (So long as it was well done, secure/private and non-commercial.)
Or via an NHS app (or whatever).
There does seem to be a gulf between something we and they consider a side effect or adverse reaction (and would consider a Yellow Card report) and both whether it works and the tiniest things that seem too small to merit a Yellow Card.
We often read of members saying a tablet tastes sweet, or salty, or starts to dissolve/disintegrate before we swallow, or a blister pack that is slightly awkward, or type on a box we cannot read. Things I think few would bother reporting through the Yellow Card system.
There’s at least 300 different hypothyroid symptoms, and when we are started on Levo these often become more apparent, especially if left on inadequate dose
Levothyroxine doesn’t top up failing thyroid it replaces it
These symptoms are frequently mistaken as being caused by levothyroxine
Other symptoms can be due to low vitamin levels, extremely common when hypothyroid
If they don’t take levo then what are they going to do or take? Not many other options. Well, there are but you’d probably have to buy, then you might have more side effects. Jo xx
The problem with giving a list of 'side-effects' is that if people expect them, they usually get them. Far better to assume there are no side-effects.
As for 'informed consent' to taking it, what's the alternative?
Plus, consider this: different brands of levo have different fillers/excipients. Some people react to them, some don't but the list of presumed 'side-effects' would be the same in every brand because the active ingredient is exactly the same in all brands: the thyroid hormone T4. So how would that be helpful to give a percentage? You'd have to go into minute detail: x % of patients had y symptom with mannitol, z% with lactose, etc. etc. etc. It woud be unworkable and would only confuse patients who don't know before taking it if they react to mannitol or whatever. It would get so complicated that it would eventually be ignored. Not everybody reads the PIL anyway.
Let us imagine that a PIL was produced which had precise percentages.
But...
Some side effects occur more in males than females. So you would want to know that in order to decide for you.
Some side effects occur more in certain age groups. So you would want to know that in order to decide for you.
Some side effects occur more in certain conditions (autoimmune, congenital, thyroidectomy, block and replace for Graves, etc.). So you would want to know that in order to decide for you.
Some side effects occur differently by formulation. So you would want to know that in order to decide for you.
The complexity of the statistics is such that in order to derive meaningful risks for you as an individual would require a book rather than a leaflet. And would require to be updated very frequently.
If everyone on this forum who had an issue with levothyroxine had put in a Yellow Card report, there would have been more than 111 reports from 2024.
(Maybe some of them have not been fully processed. The number could still rise, I assume. But likely only a little.)
Failure to put in Yellow Card reports is a very real problem. And I don't know what to do beyond pointing it out again and again and again when issues are posted here.
I’m guilty, how do I report yellow card? It’s a PPI not levo but your post makes it clear they need feedback otherwise their data is skewed and inaccurate
Not everyone that experiences side effects report them through the yellow card scheme so I really don't know how accurate you can be with identifying the number one side effect?
From my experience some are not aware of the scheme and also think side effects are to be expected and so then in turn also tolerated.
It's only from reading this forum that I now realise how important it is to report side effects. I've been guilty of not reporting previous issues that have now resulted in another diagnosis highly likely due to those previous side effects (not levo related)
I think you're asking for something that isn't possible.Even if these percentages were included in the PIL, they would be out of date by the time you read them. People stop taking meds, new people start taking those meds, people switch brands/manufacturers, the NHS buys whatever is cheaper at the time to dispense to patients, etc. The actual numbers taking a specific drug/medication at any particular time are constantly changing so the numbers having issues will also fluctuate.
If a manufacturer were forced to include this information, they would have to be amending the PIL constantly. This would mean that the cost of producing the medicines would increase, the NHS would stop buying them and the end user, you as a patient, would then have a more restricted choice of meds that actually suited you and didn't cause any unwanted side effects.
I have read that only between 1 & 10% of issues are reported. Forms are difficult for patients to complete and too time consuming for Docs. Recent events have also indicated serious reactions have been reported but not followed up. Is the MHRA protecting patients ?
I'll leave discussion of the effectiveness of the MHRA to one side. But if we do NOT report issues, and I agree doctors and pharmacists rarely do so, then it is all we have.
Posting on every platform, repeatedly, might help a bit. But can simply be ignored.
I'd actually be surprised if it were as high as 1% of issues being reported.
We saw 331 reports in 2023 - from about 33,600,000 prescriptions.
Which works out as less than 0.1% reports to prescriptions. From which we could infer fewer than one in a thousand prescriptions result in side effects or adverse reactions. Obviously (in my view) unfeasibly low.
Also many of us are on multiple medications. How do we know which is causing which side effect? I think it's up to us to take responsibility for ourselves and track our own number 1 side effects, and whether the trade off is worth it, and this will be personal and dependent upon our own bodies and medications.
I agree. And if we are that concerned on side effects, we can do oir own research beyond the package insert and use that information to decide if we want to take a hormone or medication. It's each individual's choice in the end.
In this FDA Prescribing Information for Levothyroxine, it’s,pretty clear that almost all “side,effects” (adverse reactions) are due,to over- or under-dosing and that sensitivity to the drug itself is,unknown to occur. Secondary is sensitivity to fillers and reactions to other medications. accessdata.fda.gov/drugsatf...
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