Liquid levoroxine 19 in.. 😞: Hi everyone... - Thyroid UK

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Liquid levoroxine 19 in.. 😞

birkie profile image
16 Replies

Hi everyone💖

Well 19 days on liquid levoroxine and it's hell..😭 Started with the symptoms on around day 5..stomach/ bowle noise cramps, pain, sicky feeling, my motions are brandy coloured jelly again, much the same as they were on the T4 teva tablets, this bottle i recived from my pharmacy just came in a bag.. No box, no leaflet I have no idea what formula it is.. It just says.. Levothyroxin oral solution 50mcg/5ml..sugar free, soln SF.. Take 5ml teaspoon /50mg per day.

This is me back on 50mg

Gp reduced my 50mg teva T4 tablets to 25mg until I saw the endo, who prescribed this liquid levoroxine, I feel bloody awful, I just want to die.. I'm trying to hold on till my next bloods in around 4 wk😔 I'm really not sure I can do it without being housebound..I'm finding it difficult to function 😞 if i remember I think it might have been slowdragon 🤦‍♀️when i posted i was going on liquid levoroxine I think she commented that it could be teva... I'm sure I don't get along with this brand now!! .. I've tried it in tablet form, and now liquid with the same effect 🤮.. If I had enough hair I'd pull it out, this is depressing me now😞😞

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16 Replies
helvella profile image
helvellaAdministrator

Does it have a PL number on it?

Afraid the most common principal ingredient of oral solutions is glycerol and all too many cannot tolerate such large quantities of that.

You could well be unable to tolerate either Teva tablets or Teva oral solution. But I wouldn't actually assume that the cause is at all connected to the company.

Sounds horrible and I think you really need to seek a new prescription and get some other make - probably of tablet.

birkie profile image
birkie in reply tohelvella

Hi Helvella

Tried the T4 teva tablet since late 2019 after trying several thyroid tablets which contained lactose( lactose intolerant /colitis).. The lactose free teva brand also gave me side effects probably the fillers.. I now think its probably the teva brand that's causing the issue even the T3 teva gave me some side effects, but gp got me off it.. My surgery are unfortunately not cooperative with me and just think I'm a nuisance as is my endo

Jaydee1507 profile image
Jaydee1507Administrator

I've never heard or seen liquid levo coming without a box. Also, that is an unusual strength you have been prescribed. Mine is usually 100mcgs/5ml.

The liquid Teva is actually different to the tablets, doesn't contain mannitol that is the issue for most people, so don't assume that is is that brand necessarily. Best get hold of the pharmacy and see what they have given you and what it contains.

If you can get hold of a different brand of liquid Levo then it is really handy to make very small increases and perhaps you need to try that? Maybe even split the dose to 3x during the day.

birkie profile image
birkie in reply toJaydee1507

Hi jaydee1507❤️

Yeah when I picked up the prescription I thought it was strange their was no box or leaflet, the pharmacist told me it had to be made up for me, I take 5ml spoon which is equivalent to 50mg dose which I was on on the tablets but gave me awful side effects, I will as you say contact the pharmacy to find out exactly what I've been given❤️

SlowDragon profile image
SlowDragonAdministrator in reply tobirkie

And notify endocrinologist that you’re not able to tolerate liquid levothyroxine

birkie profile image
birkie in reply toSlowDragon

Hi slowdragon

If this is teva.. It should say on the bottle but theirs nothing, but if it is teva then this brand is not good for me.. When I was in A&E a few weeks ago the doc said he was sending a report to my surgery and recommending I see an endo again.. I've heard nothing so far from my surgery on this matter, but I'm now going to chase this up, I'm ditching that endo I saw in Aug and demanding I see someone else

Jaydee1507 profile image
Jaydee1507Administrator in reply tobirkie

With the liquid, ask for a syringe. That's what is usully in the box, along with the patient leaflet. Measuring a liquid with a teaspoon is not really accurate enough and won't allow you to adjust dose either way easily.

birkie profile image
birkie in reply toJaydee1507

Sorry 🤦‍♀️I am using a syringe I got a few with my oral iodine,( unused one) their was no spoon in the bag.. It just said one 5ml spoon everyday, but their is no information on the bottle or any leaflet about what make it is, teva, ect... 🤦‍♀️

helvella profile image
helvellaAdministrator in reply tobirkie

If that's the case, it will have come from one of the (few) Specials suppliers. The pharmacy should be able to tell you the supplier and the ingredients.

Wua13262348 profile image
Wua13262348 in reply tohelvella

Absolutely agree. From another post a few days ago when we were discussing that no liquid levo of any strength or brand is available at the moment, I think I may have stumbled on what is more or less going on at the moment.

I don't understand it. I think you, Helvella will. The web site you would need to look at is the PSNC one. You probably are aware of it. PSNC is short for Pharmaceutical Services Negotiating Committee.

An example of what is on it is that on 3/10/22, a price concession was issued for September 2022 for Liothyronine 5mcg tablets , 28, at £100.94, and only applies for the month it was granted.

Birkie has obtained a 'special order' per information on the website.

A previous forum member was notified , as per info. and directive on this web site, that she needs to switch to tablets, and patient was subsequently notified , in writing, and given " a copy of the medicines supply factsheet".

At a price concession briefing in August 2022, the question was asked by a pharmacist as to whether they can refuse to dispense a generic drug that cannot be obtained at or below Drug Tariff Price. The answer being, NO, as it is against a pharmacy's NHS Terms of Service to refuse to dispense a drug on cost grounds.

We previously discussed that Boots had Alliance liquid levo showing on their system as available from premises 6 miles away from me. Each time the pharmacist orders it, it doesn't come in, and remains undelivered.

If this Alliance product exists it may be that as long as Boots don't physically deliver it to their Boots pharmacy they are not breaking their NHS Terms of Service, if this product actually exists. A license was granted many years ago for an Alliance liquid levo, when I did a bit of hunting on the internet. If delivered to the Boots pharmacy they would be breaking their NHS Terms of Service, if did not dispense it on costs grounds.

Among other things on the site it is stated that PSNC is seeking improvements to the current price concessions system following significant concerns raised by pharmacy contractors about the unsustainable level of prices imposed by DHSC ( Dept. of Health and Social Care), in the past few months, for certain medicines and has sent a STRONG AND CLEAR MESSAGE back to government that pharmacies cannot subsidise the NHS medicines bill, escalating this within the DHSC and insisting that they find urgent solutions. And so on, and so on.

?????????

birkie profile image
birkie

Hi

You mentioned glycerol.. I think that affects me to.. Not much info on the bottle

Thyroxine Oral liquid solution
helvella profile image
helvellaAdministrator in reply tobirkie

Have a look here:

Excipients with known effect:

Sodium methyl hydroxybenzoate (E219): 9mg per 5ml dose.

Glycerol: 3,780mg per 5ml dose.

medicines.org.uk/emc/produc...

I'd guess that what you got could be similar. (But no promises that it is!)

I know it is not the same as what you have - but glycerol is highlighted in the Excipients with known effect section - not just as a listed excipient. That means it is formally recognised that taking it can be an issue in at least some people.

It also gives you some idea as to how much it might contain.

birkie profile image
birkie in reply tohelvella

That was really interesting helvella👍.. In sep 2020 it was noted by the endo my cortisol was below range, I went for that procedure where they test Yr cortisol level over a period of time, all I know is it came bk that I was producing cortisol and they did the ACTH to.. that was the only info I got, I've never had my cortisol done since 🤷‍♀️ as that got anything to do with adrenals? Because I also have CKD.. 🤔

J675 profile image
J675 in reply tobirkie

That's a very short expiry date! Even if you got on alright with it, you only have six more days before it's out of date and it shouldn't have been dispensed to you like that.

birkie profile image
birkie in reply toJ675

Blimey I never saw the expiry date.. Thanks for pointing that out🤦‍♀️🤦‍♀️

helvella profile image
helvellaAdministrator in reply tobirkie

It is pretty standard for "specials" to get a 28 day expiry date.

By the time it gets to the pharmacy, and then the patient, the clock will already have been ticking. With tablets, usually in quantities of 28, at one a day, it is 100% impossible not to go beyond expiry. (With oral solutions, of course, it might not be quite so definite.)

Madness - but all too true.

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