Liquid levo not available.: Just a small rant... - Thyroid UK

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Liquid levo not available.

Jaydee1507 profile image
Jaydee1507Administrator
38 Replies

Just a small rant here, likely due to Brexit, also my dear little independent pharmacy at the bottom of my road has been taken over by a large group. Big pharma sucks!

I left my prescription for liquid Levo with them 6 days ago and having chased it they have told me they can't get hold of any liquid levo at all and have returned me my prescription. Having phoned a different and independent pharmacy they can get hold of liquid Levo but it's a different strength of 125mcgs/5ml. So now I have to get hold of a GP first thing tomorrow and get the prescription re written. My GP surgery are a bit backward in this day and age and having their own pharmacy are not on the electronic system.

So really I'm just alerting liquid levo users of current supply issues, other than getting it off my chest. Someone was asking the other day about liquid supply and had been having difficulty. Here to tell you I've suddenly found the same! 😔

PS They don't have lactose free tablets in stock at least either at the moment.

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Jaydee1507
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helvella profile image
helvellaAdministrator

Thanks for letting us know.

I assume you are getting Zentiva?

Jaydee1507 profile image
Jaydee1507Administrator in reply tohelvella

I hadn't quite got to the point of specifying a brand, mainly due to this sort of thing happening. So, no liquid Levo of any brand available at major distributors in 100mcg/5ml.

125mcg/5ml is available but will require a new prescription.

helvella profile image
helvellaAdministrator in reply toJaydee1507

Well, I *think* Zentiva are the only 125 product in the UK but I was asking to make sure - so I can double-check my medicines document. :-)

Jaydee1507 profile image
Jaydee1507Administrator in reply tohelvella

Bless your heart. Thank goodness I still have 1 local independent pharmacy who is dogged enough to track down odd medications. He's an absolute Polish diamond.

I'll report on what I end up with in the end.

Why has the UK run out of certain meds?

helvella profile image
helvellaAdministrator in reply toJaydee1507

I suspect brexit has its part to play. As does Ukraine. And Covid. And global supply chains. And lack of transparency - so we don't know what is happening, nor what to do. So much of the pharmaceutical industry is within private capital hands and they don't have to provide the same level of information that public companies do.

And it is across numerous products - definitely thyroid isn't special! More that so many of us care which product we get so substitution isn't straightforward. I think I will be changing pharmacy and have just been thinking what to say to the new place so that they understand.

Sally1253 profile image
Sally1253 in reply toJaydee1507

when i spoke to the girl at teva last week about their liquid levo she was hoping it would be back in stock end of this month/beginning of next not sure what to do if I cant get it nightmare. Looks like I will be doing walk round tomorrow again problem is they all say they cant tell what will come in. I have felt awful on zentiva this week although not had allergic reaction thankfully now to try the new brand next week and hope for the best

Sally1253 profile image
Sally1253

thanks jaydee it was me i still havent managed to get any and only week left of medication being constantly ignored by the chemist by call and email this must be why

Jaydee1507 profile image
Jaydee1507Administrator in reply toSally1253

I was trying to get through on the phone for a few days and just wasn;t being answered or was engaged. Finally got through today and they chased it to come back with the bad news. When I went in to collect the undispensed prescription they then broke the news that they had been bought out, so a double blow.

I take everything that I said back about never having issues with getting hold of liquid Levo! I tried to find the post I wrote to you but couldn't. I now only have about 1 day supply left so am panicking.

If your GP issues electronic prescriptions it might be easier for you. You basically need to get it re written for the 125mcg/5ml product, but do check that is available local to you. I'm in West Sussex.

Sally1253 profile image
Sally1253 in reply toJaydee1507

oh my goodness im so sorry I hope you manage to get some I would share mine if I had more :-( i was asking the GP what would happen if i had to stop cold turkey due to a reaction and she said it would be return of symptoms. Its a complete mess isnt it thanks so much for posting Ive been getting myself into a right state worrying about it. I had a adverse reaction to vaccine which is documented on my health record so allergic to lots of fillers in tablets, liquids, food and drinks. The GP said earlier need to stick to same brand but cant if they cant get them in can we . Im so disappointed had only just got my levels in line since developing this and hashimotos in May last year after v.

Jaydee1507 profile image
Jaydee1507Administrator in reply toSally1253

Sticking with the same brand in times like this is going to be almost impossible. As helvella says there are multiple issues culminating in a melt down of supply chains. Let's just hope that at least now we have a new Prime Minister who might be an improvement on the previous one? There's so many issues of different types in the UK it might be a while before this all settles down. This is the first time I've been turned away for Levo, ever.

I do understand your issues Sally and can't imagine the level of distress you must be experiencing. Hugs. Mine is mainly lactose and mannitol but even that can be tricky with the majority of medicines containing lactose.

Sally1253 profile image
Sally1253 in reply toJaydee1507

thanks jaydee hugs to you too, really hope you get some medicine sorted as well.

Sally1253 profile image
Sally1253 in reply toJaydee1507

did you manage to get your medicine jaydee? Ive managed to get hold of the pharmacy at last and they are hoping their contact will secure. I really hope you have

Jaydee1507 profile image
Jaydee1507Administrator in reply toSally1253

Not quite in my hot or luke warm hypo hand yet. I ran the gauntlet of phoning GP's surgery at 8.30am and picked up new prescription later. It's being ordered in and with any luck should arrive tomorrow. It is the Zentiva brand as helvella has on his/her document. ❤️

Sally1253 profile image
Sally1253 in reply toJaydee1507

aww im glad its hopefully coming tomorrow have you not taken it today? mine said they couldnt find that one trying with teva i think

Jaydee1507 profile image
Jaydee1507Administrator in reply toSally1253

I had a half dose this morning. Been splitting dose to try and get FT3 up to no avail. I can take a bit extra tomorrow. No clue what I'll do if it doesn't come in. 🙈

I'd get onto a different chemist that maybe uses a different wholesaler if I were you, just in case. Can't be seeing you go without.

Thanks for caring. ❤️

Sally1253 profile image
Sally1253 in reply toJaydee1507

aww thanks for caring too I wasnt able to get online yesterday to see if you had replied.

Jaydee1507 profile image
Jaydee1507Administrator in reply toSally1253

Picked up 3 bottles yesterday morning. As the shop assistant handed it to me she said 'look after that it's like gold dust'. 😳

No idea where this chemist found it, but I now have about 60 days worth at my current dose. Hopefully by the time I run out other stocks will have come in!

Let me know whe you get yours please? I've got everything crossed for you.

Sally1253 profile image
Sally1253 in reply toJaydee1507

Im so happy for you but so jealous too !

i feel awful on this latest type Brillpharma! im praying mine turns up too, please pray for me 😂

Jaydee1507 profile image
Jaydee1507Administrator in reply toSally1253

Praying!

Sally1253 profile image
Sally1253 in reply toJaydee1507

thank you 😊

Sally1253 profile image
Sally1253 in reply toJaydee1507

so one day left of medication and no joy from usual chemist and numerous others went to chemist i had called previously and no stock then, magically there was one solo bottle of teva left on shelf so after hours trying to get prescription sorted as previous chemist owed me item so script couldnt be split i am the proud owner of one bottle of teva 😀 the fun starts again next week 😂

helvella profile image
helvellaAdministrator in reply toSally1253

Not much help on a Saturday, still less with a bank holiday Monday, but I think it might be worth ringing round all the suppliers of levothyroxine oral solutions in the UK and asking them.

Obviously, the first part is whether you can get some for you. But it would be well worth asking why there is an issue at all. I don't remember any post that says why this is happening.

Most makes in the UK appear to be manufactured by Famar or Delpharm.

In 2019, Delpharm purchased five manufacturing plants from Famar. I suspect including the plants that make these products.

fiercepharma.com/manufactur...

However, some of the UK products are not made by Famar or Delpharm - you need to check. (I think Ten Pharma is made in the UK.)

helvella - Thyroid Hormone Medicines

I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.

From Dropbox:

dropbox.com/s/wfhrlmb5983co...

From Google Drive:

drive.google.com/file/d/11z...

Sally1253 profile image
Sally1253 in reply tohelvella

thank you helvella i have spoken to teva and they have said they have short term stock problem and anticipating return of stock end of month hopefully. I am on only able to tolerate TEVA zentiva and now brillpharma unfortunately but I will contact the other two to ask thank you for the information I will have a call round to see

GrandPrix profile image
GrandPrix in reply toSally1253

hi I wanted to ask if you have the contact details for these companies as I’ve had the same issue with liquid levo. My 8 year old takes liquid form and I have tried every pharmacy and they all have no stock. Most paharmacies have said there is a supply issue. Do all pharmacies use the same manufacturers? One pharmacy told me there was only three manufacturers and they all use the same however they are all showing no stock availability.

Sally1253 profile image
Sally1253 in reply toGrandPrix

i have tevas number it is 0207 540 7117 but yet to call the others they said if my chemist called they might be able to locate stock but to no avail so far. I think they all do use the same places unfortunately and its not the sort of thing most chemists have sat around on the shelves. I have just been doing round robin calling everywhere within 15 mile radius and just got lucky yesterday. I really hope you manage to find some

GrandPrix profile image
GrandPrix in reply toSally1253

thank you for that. It has been worrying as like you said this isn’t something that they have sat around on shelves.. hoping this gets sorted soon for all of us too x

Jaydee1507 profile image
Jaydee1507Administrator in reply toGrandPrix

Ask them about different strengths that might be available. The chemist might know phone numbers.

GrandPrix profile image
GrandPrix in reply toJaydee1507

Yes boots managed to get a bottle of the 50 over 5 ml thankfully so should be good for a bit…hopefully… thank you for suggesting..

Jaydee1507 profile image
Jaydee1507Administrator in reply toGrandPrix

Oh well done. It's such a nuisance but glad you got some. Will just have to remember to take the right amount now!😆

Jaydee1507 profile image
Jaydee1507Administrator in reply toSally1253

Hurrah! Hopefully that buys you some time for them to get some more in.

Really pleased for you.

Sally1253 profile image
Sally1253 in reply toJaydee1507

thank you everything crossed things resume to normal x

Beader3 profile image
Beader3

may I ask, why do you take liquid Levo? Are you sensitive to sulfur?

Jaydee1507 profile image
Jaydee1507Administrator in reply toBeader3

No, I have issues with lactose in tablets.

birkie profile image
birkie

hi💖

My endo prescribed me liquid levoroxine on 3rd Aug, her letter arrived at my surgery yesterday, but still I can't get it yet as my gp as not agreed to supply it, and I've been told it can take up to 2/3 weeks for my pharmacy to aquire it.. Pretty much the same happened when I was on T3.. They kept saying we can't get the T3 teva ( I'm lactose intolerant and have colitis bad gut issues) and they gave me T4 with lactose in it 🤦‍♀️ it's been a total nightmare for me, I mentioned this to my endo about supply issues and would this occur with liquid levoroxine as it did with T3, I honestly despaired at her answer she said "well even my diabetic patients are finding it hard to get their insulin" 🤦‍♀️ for one, she should be ashamed her diabetic patients are struggling to aquire their medication, and 2 she should also feel ashamed as her thyroid disease sufferers are also struggling to aquire there medication to😤 is this medication not essential for both sufferes? How are we to retain our health if we are not able to get the medication we need 🤷‍♀️ I can't believe in the year 2022 we are struggling with this issue for patients who need these drugs.. 😤😤😤

Jaydee1507 profile image
Jaydee1507Administrator in reply tobirkie

When I first had the liquid prescribed it had taken me several years to convince my GP practice I needed it. It was a real fight and they only backed down when I got a private prescription and went and bought it myself. That shamed them into it. Liquid Levo costs several hundred pounds a bottle as opposed to pennies a tablet, so they can be a bit weird about writing that prescription! Yours may have to go to a team meeting so will take a week or so perhaps.

As far as supply, for years I have not had any issues. It just seems to be the current situation where many supply chains are broken. Terrible for diabetics indeed.

Once ordered by the pharmacy the liquid is usually in the next day. If yours is taking a few weeks then you need to change pharmacy!

Good luck, I hope you get yours soon!

shaws profile image
shawsAdministrator

I'm sorry your pharmacist has been taken over by another company.

I think it is nice to have a pharmacist who knows you and also what thyroid hormone replacements suits and restores our health and does his best especially if there's a shortage.

Even though my pharmacist is still there, the shop has recently been taken over by 'another name' who has just completed a complete refurbishment of the shop so I am assuming 'the owners' are looking for good profits.

Jaydee1507 profile image
Jaydee1507Administrator in reply toshaws

I do hope the refurbishment means improvements for you. It does seem that the big names restrict use of wholesalers perhaps? Th independent chemists seem to be able to access unusual supply lines which I think is their strong point as well as knowing you etc.

Profits for owners often mean worse services for customers imo.

shaws profile image
shawsAdministrator in reply toJaydee1507

Pharmacist does his best to get me the T3 that suits as - on occasion - it hasn't been possible.

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