Levo without acacia and mannitol?: Could anyone... - Thyroid UK

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Levo without acacia and mannitol?

GreenTealSeal_ profile image
33 Replies

Could anyone kindly advise which brands do not include both of the above?

I’ve tried going through the files but am feeling pretty rubbish so can’t find what I’m looking for…sorry if it’s a bit of a dumb question!

Thanks

GTS🦭

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GreenTealSeal_ profile image
GreenTealSeal_
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SlowDragon profile image
SlowDragonAmbassador

Vencamil

Lactose, mannitol and acacia free

medicines.org.uk/emc/files/...

GreenTealSeal_ profile image
GreenTealSeal_ in reply toSlowDragon

Oh yes I remember now thank you SlowDragon!

Are there any other that are acacia and mannitol free? I seem ok with lactose so was hoping to provide stubborn gp with some options!

Is vencamil easily prescribed on nhs? I feel like my gp doesn’t believe I’m having problems..,

humanbean profile image
humanbean in reply toGreenTealSeal_

I doubt many members know the exact fillers of all the forms of levothyroxine available in the UK.

I suspect your only choice is to look at the PILs yourself. The ingredients of pills are listed in section 6 (the last section) of PILs :

medicines.org.uk/emc/search...

I used the above link to get a list of all the Levo options in the EMC (Electronic Medicines Compendium) and picked the first one in the list (Eltroxin 100mcg tablets), looked at the PIL and found this...

The active substance is anhydrous levothyroxine sodium. Each tablet contains 50 and 100 micrograms of anhydrous levothyroxine sodium respectively.

The other ingredients are sodium citrate, lactose, maize starch, acacia powder and magnesium stearate.

Since it contains lactose and acacia powder in the Advanz Pharma version of the pills I probably wouldn't want to take it myself.

Note that some names e.g. Eltroxin and Cytomel, are used by more than one company and aren't always identical products. For example, if company A and company B both make and sell Eltroxin they aren't guaranteed to contain exactly the same ingredients.

The EMC does not contain a complete list of all products prescribed in the UK. Some companies keep copies of their PILs and SmPCs on their own websites.

GreenTealSeal_ profile image
GreenTealSeal_ in reply tohumanbean

Thanks I’ll try and have a look through.

It’s just the acacia and mannitol which seem like common intolerable ingredients so just wondered if somonenone was in a similar issue to me and what brand helped

SlowDragon profile image
SlowDragonAmbassador in reply toGreenTealSeal_

Specialist pharmacies can supply Vencamil eg Springfield pharmacy

thyroiduk.org/get-support/t...

GP needs to name it as Vencamil on prescription

Prescriptions can be sent there electronically

You will have to pay postage

or

How to get Vencamil stocked at your local pharmacy

healthunlocked.com/thyroidu...

Posts discussing Vencamil

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu....

GreenTealSeal_ profile image
GreenTealSeal_ in reply toSlowDragon

Thank you but my gp says they cannot put a specific brand name on my prescription. I’ve asked twice already :(

helvella profile image
helvellaAdministrator in reply toGreenTealSeal_

Honestly, they can. They either don't realise how to do it, or they won't.

GreenTealSeal_ profile image
GreenTealSeal_ in reply tohelvella

Ah!! It’s frustrating they are being so unhelpful toward me. I feel like because things are complex they want to wash their hands of me completely. I seem to have gained a reputation as a ‘hypochondriac’ which is so untrue and very unfair and I feel like no one is listening or taking my medication issues seriously.

Tbh I imagine it’s probably something I will have to sort privately…:(

helvella profile image
helvellaAdministrator in reply toGreenTealSeal_

I'm having problems as well!

My 100 tablets are just about written adequately. But the 25 have not been changed. I've emailed several times. I've visited the surgery a few times. I've even asked within a GP appointment.

And when they speak of "more expensive", they don't seem able to appreciate that an extra pound a pack (or something like that) is less costly than dealing with my multiple requests!

Quite honestly, I'd be happy to pay the cost (either incremental or total) but there is no mechanisms to do so. And as soon as you go for private prescriptions costs rapidly escalate.

GreenTealSeal_ profile image
GreenTealSeal_ in reply tohelvella

Why is it so difficult for them!? It’s so bizarre.

I wonder if it’s worth me trialling vencamil private and then asking them to specify this to a gp if it helps?

Everything is so drawn out on the NHS- something that could be done within a week takes months..:(

helvella profile image
helvellaAdministrator in reply toGreenTealSeal_

The initial issues were Vencamil being added to the surgery and pharmacy computer systems.

Which, while not acceptable, and very frustrating, is at least possible to understand.

Everything afterwards has just been madness.

SlowDragon profile image
SlowDragonAmbassador in reply toGreenTealSeal_

GP Just being obtuse (or doesn’t know how and too arrogant to ask for help)

Government guidelines are quite clear they can and should specify brand if a patient needs it

Print this out and give them

Government guidelines for GP in support of patients if you find it difficult/impossible to change brands

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.

If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

And here

pharmacymagazine.co.uk/clin...

Discussed here too

healthunlocked.com/thyroidu...

GreenTealSeal_ profile image
GreenTealSeal_ in reply toSlowDragon

Thanks I’ll print these out for reference and hopefully will be able to get somewhere!

Kazania profile image
Kazania in reply toGreenTealSeal_

Yes they can I’ve had Wockhardt put on mine, now I have to get the pharmacist to conform!

GreenTealSeal_ profile image
GreenTealSeal_ in reply toKazania

Right well they’re clearly fibbing to me aren’t they. Even my endo said excipients could be the culprit so hopefully gp will be more willing to prescribe!! It shouldn’t be this hard should it :(

Kazania profile image
Kazania in reply toGreenTealSeal_

No it shouldn’t. I hope you get sorted. I notice on Helvella’s post that the ingredients of wockhardt have changed, I’ll have to double check my data sheet when I get it. It seems they’ve changed to an ingredient which is in crescent brand, crescent doesn’t suit me. Heigh ho! Nothing’s straightforward is it! Take care😀🤞🏼

GREENcard13 profile image
GREENcard13 in reply toGreenTealSeal_

Your gp can specify a particular brand because mine does

SilentDreamer profile image
SilentDreamer

I can't tolerate mannitol or lactose. I have Vencamil tablets although the chemist is again having issues with sourcing it for me. The Dr told me that he couldn't ask for a specific brand which I was told on here that he could. When I went back to inform him of this he agreed to write on my prescription "please supply lactose and mannitol free tablets" or words similar to that.

I got in contact with the local health board prior to this and they gave me a list of products including it in liquid form which costs more. They told me that I should be able to have Vencamil and gave the order numbers but the chemist wasn't interested in seeing.

The chemist told me brands other than Teva or Accord cost them more(I cannot tolerate either brand)which is why most only stock those. Just be persistent hopefully you'll find a brand that suits then stick to it.

SlowDragon profile image
SlowDragonAmbassador in reply toSilentDreamer

Get your GP to write just Vencamil on the prescription (not levothyroxine)

Then pharmacy has to supply and they will get correct payment for it

helvella profile image
helvellaAdministrator in reply toSilentDreamer

The other day I pointed out that this is not as simple as it sounds.

For example, all Vencamil products are more expensive than Teva at the same dosage - except the 75 microgram where Vencamil is less expensive.

(These are the NHS prices from the dm+d database.)

SilentDreamer profile image
SilentDreamer

Once you've got the brand that suits you any other symptoms of not feeling 'normal for you' may need you to make sure your vitamins are optimal and what I found a game changer was that I wasn't having enough protein in my daily diet. I would feel like the 'duracell bunny' running out of battery in the middle of doing my daily tasks. It's surprising how much you need when you google it, then it's eating the correct foods, I found eggs made the difference for me it would feel like a fog was lifting, batteries recharged and would feel like 'normal' me. I snack on Brazil nuts, have peanut butter in my porridge and tinned sardines or mackerel are good too to help get enough in 1 day. I need 100g to feel good.

Andie222 profile image
Andie222

I think Wochardt is free of mannitol and acacia.

GreenTealSeal_ profile image
GreenTealSeal_ in reply toAndie222

Thanks!

nightingale-56 profile image
nightingale-56

We have found that my Son can only have Accord at the moment, which has neither Acacia Powder or Mannitol in it. I was not too bad on Wockhardt which also has neither of these two excipients.

GreenTealSeal_ profile image
GreenTealSeal_ in reply tonightingale-56

Thank you :)

Kazania profile image
Kazania

I made myself a spreadsheet laboriously from various online data sheets. I can’t guarantee that I haven’t made mistakes, but the following seem to be free of both acaia and Mannitol: Wockhardt, Almus, Actavis, Accord, Aristo, Crescent. You could double check if you think one will suit you. Hope this helps.

GreenTealSeal_ profile image
GreenTealSeal_ in reply toKazania

Thanks a bunch! This helps a lot!

Think I’m gonna try and ask for vencamil first and see how accommodating they are!

helvella profile image
helvellaAdministrator

The attached image is the matrix of UK levothyroxine tablets from my document.

helvella - Thyroid Hormone Medicines - UK

The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and liothyronine available in the UK. Includes injectables and descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK-licensed products and links to Patient Information Leaflets, Dictionary of Medicines and Devices (dm+d), British National Formulary, NHS Drug Tariff, etc. PLUS how to write prescriptions in Appendix F.

Also includes links for anti-thyroid medicines (but not product details).

📄 dropbox.com/s/bo2jzxucgp9hl...

Screenshot of UK levothyroxine tablet matrix
GreenTealSeal_ profile image
GreenTealSeal_ in reply tohelvella

Ah thank you so much!! This is what o was trying to find in my other posts as I know you shared with me before but couldn’t remeber on which thread! Thank you!

helvella profile image
helvellaAdministrator in reply toGreenTealSeal_

My profile has a link to my blog - and all my documents are linked there! :-)

I don't often post the image because it might be out of date within hours! And I'm never going to come back and update my posts - simply not viable.

Much better to view my actual document which will be as up to date as I can achieve.

GreenTealSeal_ profile image
GreenTealSeal_ in reply tohelvella

Ah thank you I didn’t think to check your profile- doh! I’ll save a copy next time I’m at my PC!

Vencamil sounds like a sensible suggestion to try for now! :)

GREENcard13 profile image
GREENcard13

wockhart 25 is acacia & mannitol free. I’m on 75 so I take 3 daily

GreenTealSeal_ profile image
GreenTealSeal_ in reply toGREENcard13

Thank you! I’ve actually managed to get them to prescribe Vencamil for me today after much pestering!!

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