Should not the Levothyroxine patient be told wh... - Thyroid UK

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Should not the Levothyroxine patient be told which is the Number 1 side effect?

Persevere99 profile image
62 Replies

Hi

Looking at any list of Levothyroxine side effects, one only sees a long list of Common side effects,

Nowhere does it say X is the Number 1 side effect.

One way to do this would be to add a Percentage, by counting the side effects reported via the Yellow Card scheme, alongside each side effect?.

Why does the MHRA not count all the Yellow Cards for each side effect, that comes in?

Then, each side effect in the long list of Common side effects can be placed in order, starting from the highest percentage to the lowest.

Then, the list of Common side effects with the Percentage alongside can be displayed in the leaflet.

Then the reader will be accurately informed.

Instead of the current misleading system, with all the side effects just listed in a group, without any mention which is the Most Common.

Then, the Levothyroxine patient will be adequately informed and can give their consent, or not, to take the medication?

Thanks

Persevere

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Regenallotment profile image
RegenallotmentAmbassador

yeah but we all react differently to fillers and active ingredients. I think they just say common/uncommon to cover all.

Persevere99 profile image
Persevere99 in reply toRegenallotment

How difficult would it be for the MHRA to count all the Yellow Card Levo side effects that have come in?

Then, allocate a Percentage to each side effect?

Then, instruct manufacturers to pass them on to the Levo patient?

The fact that they DON’T pass on this key information to the patient, will mean that NO Levo patient gives their consent to taking it.

All the best.

Persevere

Obsdian profile image
Obsdian in reply toPersevere99

Using yellow cards to formulate a percentage affected by side effects would be inaccurate as it doesn't count how many don't get them.

Persevere99 profile image
Persevere99 in reply toObsdian

Hi

This is incorrect.

The NHS has the numbers of patients taking Levo and every other medication.

So, a percentage of those not having side effects can be calculated.

However, my original question was this -

Which is the Number 1 side effect of Levo?

Persevere

Obsdian profile image
Obsdian in reply toPersevere99

Actually it was should patients be told which is the number one side effect.

helvella profile image
helvellaAdministrator in reply toPersevere99

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.

TaraJR profile image
TaraJR in reply tohelvella

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.

helvella profile image
helvellaAdministrator in reply toTaraJR

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.

Astrido profile image
Astrido in reply tohelvella

Exactly.

helvella profile image
helvellaAdministrator

All the data you are asking for is, I think, available. Albeit maybe not presented exactly as you wish.

(This link does not work in all browsers. For me: OK in Safari; fails in Firefox.)

Interactive Drug Analysis Profile

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

Persevere99 profile image
Persevere99 in reply tohelvella

Thanks helvella.

However, again, the side effects are listed in a Group as Common.

This is not the accurate information the Levo patient is looking for.

If the Percentage was given alongside the side effect, the patient would be able to accurately weigh up the Risk of each side effect?

Then, consent, or not, to take the Levo?

With your many years on HU, are you aware which is the Number 1 side effect?

Thanks

Persevere

helvella profile image
helvellaAdministrator in reply toPersevere99

I don't know what you are looking at. I can't even see the word "common" on the page.

Screenshot
helvella profile image
helvellaAdministrator in reply toPersevere99

3.6623% of all reported side effects were classed as "headaches" without any additional description.

And no, I would not have known off the top of my head which was the number one reported issue. Even had I known last month, it might have changed.

Also, that is across all reports since 1967.

jgelliss profile image
jgelliss in reply tohelvella

In all honesty Helvella it never made sense to me that patients depending on Thyroid med hormones are made with fillers that Thyroid depended patients don't do well. By now they should know that Thyroid patients are very sensitive to fillers and dyes.

helvella profile image
helvellaAdministrator in reply tojgelliss

Trouble is, there seems to be absolutely nothing that is universally tolerated.

And, at least in the UK, the products DO NOT contain dyes.

jgelliss profile image
jgelliss in reply tohelvella

It's a shame. I think thyroid patients can read and recognize the dimensions of their thyroid pill without dyes. Just my humble opinion.

helvella profile image
helvellaAdministrator in reply tojgelliss

Typo - DO NOT contain dyes!

It tends to be those who have a huge range of dosages that use colours for levothyroxine. Basically, everything modelled on Synthroid.

Mlinde profile image
Mlinde in reply tohelvella

Worked in my Firefox, Macbook Air 14.7.3, Firefox 134.0.2

SlowDragon profile image
SlowDragonAmbassador

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

Persevere99 profile image
Persevere99 in reply toSlowDragon

Thanks slowdragon

However, it’s not too much to ask is it, for the MHRA to list as a Percentage, all the different Levo side effects via the Yellow Cards that come in?

Then, the Levo patient can consent, or not, to take the Levo.

Persevere

SlowDragon profile image
SlowDragonAmbassador in reply toPersevere99

But they aren’t “side effects “ of taking levothyroxine

They are almost always hypothyroid symptoms

Lupaal profile image
Lupaal in reply toPersevere99

I can't think of any side effect that could be worse than hypo symptoms.

Stourie profile image
Stourie in reply toPersevere99

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

Joiesmom profile image
Joiesmom in reply toPersevere99

In my opinion, the number one side effect is fast heartbeat. After years on Levo I was forced to go on a beta-blocker to slow my palpitations. I've read many testimonials stating the same. According to BuzzRx heart problems are the greatest. buzzrx.com/blog/what-are-th...

greygoose profile image
greygoose

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.

Libuse profile image
Libuse in reply togreygoose

A very sensible response. 😊

greygoose profile image
greygoose in reply toLibuse

Thank you. :)

jgelliss profile image
jgelliss in reply togreygoose

GG wish they would get rid of fillers that work against us thyroid dependent patients.

greygoose profile image
greygoose in reply tojgelliss

I'm sure they would if they could but there has to be some sort of filler to bulk out the pill. If all you put in it was the tiny amount of thyroid hormone, the pill would be so small you'd lose it under your finger nail! And not all people react to the same fillers, so there has to be something for everyone. You just have to find the one that suits you best by trial and error.

What I do wish is that doctors, nurses and pharmacists would stop insisting that all brands are exactly the same and we're imagining any reactions to the fillers. They're either very dumb or lying through their teeth! Probably the latter. The whole distribution system should be revised to that people are not forced to take brands that make them ill and can chose which they want.

Duchy82 profile image
Duchy82 in reply togreygoose

I just want to add as well without the filler the medication won't compress into a tablet or capsule at all, yes even capsules need fillers to create a lightly compressed shape in order to fill the capsule so you'd be left unable to make the medication needed. Used to work for a place that made supplements and medications for animals so I know my way around a tablet press and a encapsulating machine. Even those medications that get made into sachets and tubs have flowing agents, etc. in them.

jgelliss profile image
jgelliss in reply togreygoose

It's so true.😂😂😂😂

Calceolaria profile image
Calceolaria

I think side effects are usually listed in order on the PIL?

Persevere99 profile image
Persevere99 in reply toCalceolaria

Yes, a long list of about 25 Common side effects. Without a percentage figure alongside.

Would that not lead the average reader to believe that each of those 25 Common side effects had the same percentage likelihood of occurring?

Is this not false information?

Thanks

Persevere

helvella profile image
helvellaAdministrator in reply toPersevere99

I think your expectations are impossible.

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.

Calceolaria profile image
Calceolaria in reply toPersevere99

It’s been an interesting post. Do you take levo?

For me, this is how subjective me taking it has been

1. I rejected a brand before even trying it because I suspected the filler would bother me.

2. I didn’t feel ‘right’ on a very popular brand which is said to suit most people. What that ‘not right’ feeling was, I cannot put into words.

3. I’m probably ‘happy’ on two brands, to equal 75mcgs, one of which bothers some people but I have no real way of scientifically judging why I’m ‘happy’ with it. The bottom line is that I’m not ‘happy’ to be hypothyroid at all and I’m not ‘happy’ to have take meds everyday forever and I had some difficulty accepting that this had happened to me despite all supporting evidence.

4. Finally, I would fear being without it and basically I’m amazed and grateful that it was created!

So someone like me could never really rely on other evaluations.

Persevere99 profile image
Persevere99 in reply toCalceolaria

Yes been on Levo for 6 years now.

I found out myself via Medichecks that my TSH was slightly over range and then saw an endo privately and he started me on Levo.

Libuse profile image
Libuse

it the individual that counts not the percentage. Thank goodness there is a hormone replacement available to keep us all at least semi functioning.

Hectorsmum2 profile image
Hectorsmum2

I don t think the data is available to them to provide to us. Most side effects reported would be hidden away in doctors notes or not reported at all.

helvella profile image
helvellaAdministrator in reply toHectorsmum2

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.

Stills profile image
Stills in reply tohelvella

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

helvella profile image
helvellaAdministrator in reply toStills

Absolutely excellent news that you will do that. :-)

Yes - very much across ALL medicines.

There is a pinned post (at the right on a computer, and scroll down on a phone - I think):

🟨 Making Yellow Card Reports 🟨

healthunlocked.com/thyroidu...

Persevere99 profile image
Persevere99 in reply toHectorsmum2

If it’s hidden away, the relevant prescribers should be sacked.

After all, the main duty of a doctor is do no harm. And one way to do this is fill millions of Yellow Cards, is it not?

Thanks

Persevere

Hedgeree profile image
Hedgeree

Hi Persevere99,

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)

Persevere99 profile image
Persevere99 in reply toHedgeree

Everyone, especially prescribers, should report every side effect.

Then the MHRA can use this info to pass on to the Levo patient via the PIL.

Jingley profile image
Jingley

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.

Persevere99 profile image
Persevere99 in reply toJingley

Yes, everyone, prescribers especially, should keep sending in Yellow Cards for every time they notice a side effect.

Then, miraculously, one day a Levo will be produced with minimal side effects.

Jingley profile image
Jingley in reply toPersevere99

There will never be one single medication/treatment for a problem that is universally ok for everyone.

If you find a levothyroxine that suits you personally, it can be almost guaranteed that someone somewhere will have an adverse reaction to it.

Marz profile image
Marz

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 ?

helvella profile image
helvellaAdministrator in reply toMarz

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.

Persevere99 profile image
Persevere99 in reply toMarz

Then the MHRA is not fit for purpose.

Astrido profile image
Astrido

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.

Obsdian profile image
Obsdian in reply toAstrido

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.

Persevere99 profile image
Persevere99 in reply toObsdian

The choice should be made on up to date side effects information should it not?

So, keep sending in Yellow Cards for every time you experience a side effect. As I have.

Obsdian profile image
Obsdian in reply toPersevere99

Like others have said, it's not exactly possible to have constant updates to stats om every medication.

And no, I don't think it should be up to date to the extent you seem to think it should. If there are major changes or developments, yes update, if a certain period has passed, yes review.

Also, I haven't had any levothyroxine side effects, just hypothyroid symptoms. So no yellow cards from me.

Poniesrfun profile image
Poniesrfun

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...

Patti in AZ

Duchy82 profile image
Duchy82

I think it would be impossible for the drug manufacturers to keep a PIL up to date with exact percentages of the side effects perceived by patients. They are a forever changing statistic and each change to the PIL would require a regulatory update with every marketing authority that that manufacturers holds a licence to produce said medication with. These kinds of changes take anywhere from 3 months to over a year to be reviewed and approved depending on the marketing authority. So it is likely that they will be out of date before the approval to change the PIL has been obtained.

redhead41 profile image
redhead41

I'm not sure that it works like that. There might be near zero risk of a symptom but if it is the one you have, then it is the most important one to you. We are all different and react differently to everything. You have to remember that levo is a replacement of your own thyroid hormone not a top up. If your levels are low they need replacing with something.

Nwdx profile image
Nwdx

I have taken it over 30 years since 90's and no complaints. When dosage is wrong, I get really tired and fatigued, get blood test and increase or decreased dosage between 100mcg-150mcg all these years- otherwise experienced no issues with blood or anything on that list above. Now I do have cancer fwiw. Links it somewhere I read, tried to search forum cannot find the post. Who knows. But cannot just simply quit using it after all these years.

Persevere99 profile image
Persevere99 in reply toNwdx

Sorry to hear about your cancer.

I read you don’t want it treated?

That’s a long time on Levo. Do you do the tests or does the GP do them?

My GP doesn’t do anything at all so I go to Medichecks every 6 months.

I’ve been vegan and athletic for 35 years now.

I see you are trying vegan diet and exercise.

All the best.

Persevere

Nwdx profile image
Nwdx in reply toPersevere99

Yes, the treatments IMO are all bull$hit and high likelihood of destroying your life treatments and with the side effects and further suffering (Just read the stories on the other forums I am on, it's terrible). I have not been formally biopsied, and refuse to do so nor go to listen to any Dr's recently (Over a year ago and T3 was out, so changed dose) and manage it myself since I am of little confidence in Dr's guessing as good as I can guess. Congrats, I just started this vegan diet last year and it really is brutal for the change. But for the cancer possible apoptosis, I am trying to follow it.

3-T1AM profile image
3-T1AM

Persevere99...did you share or want to share what side effects you are referring to? Sorry if I missed that. Unintended consequences of medications is a huge problem that doctors will never tell you about.

Persevere99 profile image
Persevere99

Hi

Not experiencing any side effects that I am aware of.

However, when you read the Levo leaflet (or any other medication’s leaflet, there’s about 12 side effects listed as Common.

Now, how can anyone tell which is the Number One side effect reading that?

One way to provide accurate side effects information to the patient would be to provide a percentage rating, for each listed Common side effect, by the Yellow cards that come in?

Then, the reader, will 100% know which is the Number One, two, three etc.

Thanks

Persevere

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