Colonis liquid levo - please help!: Hi everyone... - Thyroid UK

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Colonis liquid levo - please help!

Catfink
Catfink
37 Replies

Hi everyone,

I’m hoping someone out there can help me. After years of self medicating and nhs tests, and expensive private tests, and endo, and gastroenterologists, i have *finally* found a med i am well on. It is Colonis brand 50mcg/5ml sugar free levothyroxine oral solution. It really is my holy grail. The only problem is now, that the chemists around me - and i have tried ALOT - can only get Mercury or Teva, and both of these brands make me very poorly, worse than being untreated.

I currently have no meds & i’m so tired and depressed. Does anyone know somewhere i can fill my nhs prescription with Colonis, is anyone else taking it?

It’s such a problem when these generic meds are issued in any old chop & change fashion, when their effects are so vastly different.

I hope someone can help, i am truly at my wits end and i don’t know what else to try :-(

37 Replies
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RedApple
RedAppleAdministrator

Catfink, I have never heard of any UK levo, tablets or liquid, under the name of Colonis. How did you come to get it previously?

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Catfink
Catfink
in reply to RedApple

Thanks for your reply. It just came in a boots prescription, but there’s none in their warehouse now :(

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RedApple
RedAppleAdministrator
in reply to Catfink

Have you tried the Teva/Mercury liquids? Those two are the same stuff in the bottles, just with different branded labels.

On checking out the ingredients of the Colonis to see how they differ from the Mercury and Teva liquids, they don't look to be all that different. Here is what I found:

Teva excipients are: glycerol, citric acid, sodium methyl parahydroxybenzoate (E219), sodium hydroxide and purified water. drugs.com/uk/levothyroxine-...

Colonis excipients are: glycerol, citric acid anhydrous, sodium methyl parahydroxybenzoate (E219), citric acid 10% and purified water. medicines.org.uk/emc/files/...

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Catfink
Catfink
in reply to RedApple

Thank you so much for the help. Yes i’ve tried both Mercury and Teva, and both make me very ill, unfortunately. And i’ve tried all (i think) the makes of tablet. I thought i’d found the answer to all my prayers, but i’m assuming the “big warehouse” wherever that is, has run out :(

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RedApple
RedAppleAdministrator
in reply to Catfink

Ok, after a bit more investigation, Colonis liquid appears to be an 'unlicensed medicine' made in the UK by Quantum Pharmaceutical. quantumpharmaceutical.co.uk... So I think it was just luck that you happened to get it previously and it's not normally available.

However, GPs are allowed to prescribe specific unlicensed medicines, but you will need to persuade your GP that you absolutely must have this one and no other!

It may need to be prescribed under the "Named Patient Basis" - info here thyroiduk.org/tuk/treatment...

Hope this helps :)

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Catfink
Catfink
in reply to RedApple

Hi again, as far as i know it is licensed? As here: qna.files.parliament.uk/qna...

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RedApple
RedAppleAdministrator
in reply to Catfink

That looks to be just a list of available meds. It doesn't really indicate whether or not they are licensed.

I would make contact with the manufacturer Quantum. They will be the ones to know! You could use their email enquiry form or try phoning them quantumpharmaceutical.co.uk...

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RedApple
RedAppleAdministrator
in reply to RedApple

If it truly is a licensed product, then you can simply ask your GP to stipulate this one ONLY on your prescription.

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Catfink
Catfink
in reply to RedApple

Yes, she’s done that, i just can’t find a chemist to fill it

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RedApple
RedAppleAdministrator
in reply to Catfink

Try contacting the manufacturer to find out who their distributor for this product is. If it's available, someone must be able to get it. Maybe an independent pharmacy can help.

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RedApple
RedAppleAdministrator
in reply to RedApple

Or an online pharmacy, such as the ones listed on the TUK website here thyroiduk.org/tuk/treatment...

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Catfink
Catfink
in reply to RedApple

Thankyou for all your advice, I really do appreciate your help. Yep, I’ve tried all these things, and I think the same as you, it must be available from somewhere! I find it hard to believe I could be the only person in this boat. The makers have never replied to my email, and the online guys say that as it’s in the pool of generics they can only send out whatever’s in stock even if my prescription specifies a particular one. I’m currently just googling email addresses for every chemist in a 50 mile radius and asking each one if they can get it. A prescription only lasts 3 weeks, so i’m not really sure where to go from here. I may have to go back to self meds which i know is dangerous

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RedApple
RedAppleAdministrator
in reply to Catfink

The ingredients of the liquids I listed above are so very similar. The only difference appears to be a bit extra citric acid. Long shot I know, but I wonder if adding a little bit of citric acid powder to the Teva/Mercury liquid would help. Or taking a little vit C at the same time as the liquid levo. This is probably far too simplistic and not going to work, but I know I would give it a try in your situation!

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Catfink
Catfink
in reply to RedApple

At this stage i’ll try anything! My gut instinct is that the levo’s themself inside the formulations are different. I do take slow release vit c already, along with a couple of other vits. I read somewhere that some are synthetic and others are animal derived. There’s nothing on the bottles to say. I did ask the Q in my email to Quantum, but they never replied. This was only a werk or soago though, so maybe they will

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RedApple
RedAppleAdministrator
in reply to Catfink

As far as I'm aware, all levo (i.e. T4 only) preparations are synthetic, so I don't believe the levo itself can be different. helvella is the expert on the chemistry stuff, so I'm calling him out for his input on this :)

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Catfink
Catfink
in reply to RedApple

I look forward to hearing about that. It’s one of my less well researched areas. Thanks again :)

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helvella
helvellaAdministrator
in reply to Catfink

All thyroxine - other than what is present in desiccated animal thyroid products - is synthetic.

As use of animal thyroid gland became more widespread, chemists set about extracting the vital ingredient responsible for overcoming symptoms of hypothyroidism. The first success went to US chemist Edward Kendall, who succeeded in isolating 7g of thyroxine from some 3,000kg of pig thyroid gland in 1914.

pharmaceutical-journal.com/...

The sheer scale of animal thyroid processing that would be required nowadays is difficult to imagine.

The only realistic differences between levothyroxine active pharmaceutical ingredients that I can think of are:

🔹 Impurities and breakdown products

🔹 Precise crystalline structure (if that matters at all)

🔹 Precise level of hydration

All the above will be affected by the process of manufacturing tablets or liquids anyway so it is not at all clear whether there would be any meaningful differences in the final products.

I'd telephone the relevant companies.

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Catfink
Catfink
in reply to helvella

Thankyou :)

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McPammy
McPammy
in reply to RedApple

I’ve recently had this same brand from my local chemist. 2nd prescription came as Wokhardt liquid which is made in the UK

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McPammy
McPammy
in reply to RedApple

I’ve had this brand recently

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posthinking01

Hi I take Mercury Pharma and cannot take anything else - not heard of Colonis. Why don't you call the manufacturer like I did in Canada when I was having trouble getting MP - they will tell you which distributor supplies which chemist.

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Catfink

Thank you. I actually think i will do that! I have emailed but they didn’t reply. It’s so frustrating isn’t it?

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posthinking01

My husband got on to Canada make sure you say it is a complaint and how you are at risk if you don't get it like we did. I had to get on to my MP to investigate as Canada were saying no supply issue but independent chemists and then Boots were saying they could not get it only Teva. It took about 8 weeks to sort out and I had two spoonfuls left.

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Catfink

Mine’s completely gone now, i feel horrible :( i hope i have success in the end like you did. Thanks for the advice

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posthinking01

That's dreadful and dangerous - are you sure you can't take anything else - I am very sensitive and MP suits me - I take because I am lactose intolerant as it is sugar free - why do you elect to take liquid - for same reasons?

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Catfink

I know, there’s nothing i can do, i just can’t get any :(

The endocrinologist put me down for liquid because i’d tried all the different tablets. The side effects i get on each tablet is exactly the same as it’s corresponding liquid, which makes sense i guess. If colonis made a tablet, i’m sure that would be ok too, but unfortunately they don’t.

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Catfink

p.s. Colonis only do liquid so I think that’s why they’re less well known

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McPammy

Hi. I was recently started on this same brand of Levothyroxine liquid. My second prescription has recently arrived. This time a different brand called Wokhardt. It’s made in the UK. Also sugar and Colorant free. I think liquid is also a god send especially in terms of dosing to your own needs. Before I was having to split tablets. If you want to pm me that’s fine.

Pam

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McPammy
McPammy
in reply to McPammy

I’ve also had difficulty this year after 11 years on Levothyroxine. I’ve recently found out my issue is blood pressure! I’m ok before I Take levothyroxine and hour later my blood pressure is too high. Hours later it goes back down. I’m being investigated next week for peripheral vascular disease. I’m 60.

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Catfink
Catfink
in reply to McPammy

And I hope your tests get sorted & your problem fixed asap

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Catfink
Catfink
in reply to McPammy

Wokhardt is the only one i haven’t tried yet. None of the pharmacists I tried said they had that one available either, only Mercury & Teva. I agree with you, liquid is much easier to have an adjusted dose

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McPammy
McPammy
in reply to Catfink

Where are you. I’m in Chester.

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Catfink
Catfink
in reply to McPammy

I’m in Cumbria

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McPammy

Try Wokhardt

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Catfink

Update: I’ve phoned Colonis and they tell me that they’ve sold their liquid levo production to another company called Creo Pharma. I phoned Creo, and they tell me they can only speak to pharmacists. So I’ve sent the number to a local pharmcist and will update you if anything more happens. Still no joy though. In fact probably further away :(

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RedApple
RedAppleAdministrator
in reply to Catfink

Well done and keep positive, hopefully this pharmacist can source it now.

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RedApple
RedAppleAdministrator
in reply to Catfink

Interesting that they wouldn't speak to you about it. On their website, under levothyroxine liquid solution it lists the various strengths and also says:

For general medical information about this medicine, to report an Adverse Event or if you are experiencing any unusual side effects whilst taking this medicine please call:

01892 739 304

This definitely seems to suggest someone on that number would interact with patients. The actual ingredients are not listed, so maybe you could call that number to check that it is the one you're looking for and ask about how your pharmacist can obtain it.

creopharma.com/products.php

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