Do you take lactose-free Levothyroxine oral sol... - Thyroid UK

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Do you take lactose-free Levothyroxine oral solution?

Zeitgeist profile image
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Hi, is anyone taking Levothyroxine Oral Solution?

I am lactose intolerant and have been taking compounded capsules of levothyroxine from Martindales Pharmaceuticals for the past 9 years. I was unable to tolerate any of the l-thyroxine tablets prescribed by my NHS GP. (I tried for a year).

The price of the compounded capsules was around £130 for 100 when I started taking them, but the price has steadily risen since, and about a year ago began to double in price every 6 months. The cost is now over £500 for 100 capsules (3 months supply) and I can no longer afford it. The NHS has never paid for it and certainly will not pay now!

I understand from my local pharmacist some patients get lactose-free oral solution of l-thyroxine on the NHS. There are about half a dozen different makes of the lactose free oral solution detailed on Thyroid UK's helpful list of thyroid medications. I intend to ask my GP to prescribe one of them, but would be pleased to hear comments from anyone who is taking the oral solution:

1/ if you were previously taking a powdered form (tablets or capsules) do you find the oral solution as effective in keeping your TSH, T4, T3 in the levels you want them to be?

2/ Any side effects from taking the lactose free oral solution e.g. reactions to any additives or fillers?

3/ Which make of lactose-free oral solution do you take? (the price quoted for one make by my pharmacist was £400 for one month's supply!!! I am hoping I can find a cheaper make than that, or my GP will refuse to prescribe it!)

I would also be glad to have comments from anyone who is taking lactose-free tablets or capsules of l-thyroxine prescribed on the NHS.

Many thanks guys. :)

Zeitgeist

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helvella profile image
helvellaAdministratorThyroid UK

Have you considered ordering another make of levothyroxine tablet such as L-Thyroxin Henning from Germany? It is lactose-free and does not contain mannitol. And is massively less expensive.

thyroiduk.org.uk/tuk/treatm...

(I am well aware that brexit might mean that Germany will no longer recognise UK prescriptions but it appears we might be OK for the rest of the year - not yet confirmed, though.)

Some people find the significant amount of glycerol in the liquids too much to cope with.

ALL liquid levothyroxine products are expensive, see here:

bnf.nice.org.uk/medicinal-f...

Zeitgeist profile image
Zeitgeist in reply to helvella

Many thanks for your helpful reply. I would be happy to order my thyroxine from Germany but am concerned, post-Brexit, how easy this will be, as it will in future be inspected by UK Customs and Excise. Import duties may also be added to the cost. But I will certainly look into it. :)

Malaguena25 profile image
Malaguena25

Hi there,

I'm so sorry to hear how complicated this all is for you.

I used to take medicine (for depression) that had lactose in them and as I'm lactose intolerant my doctor at the time in Germany just proposed that I take a lactase enzyme tablet 5 minutes before taking my medicine. That way the enzyme has time to travel to your gut before the medicine arrives and the lactose can be broken down.

It worked really well for me and I took them for around 3 years. I continue to take the lactase enzyme for any dairy food I eat. I use the ones from Lea Gogo, they are new on the UK market but they work really well for me. (They're made in Germany, that's what convinced me). Here: leagogo.com

I know they don't work for everyone though! So maybe it's best to discuss with your doctor or to trial it out.

I hope this helped :)

Zeitgeist profile image
Zeitgeist in reply to Malaguena25

Thank you for your helpful reply. :) I must admit I hadn't thought of taking a lactase tablet and it's never been suggested by the GP. I think in these circumstances it is just possible the lactase enzyme might work for me.

I have been dairy intolerant all my life and did try lactase tablets about 30 years ago. The lactase didn't help with my intolerance to dairy, but I suspect this may have been due to the casein in the dairy products, (not just the lactose) and which, unlike lactose, is not processed by the lactase enzyme.

But as the thyroxine tablets contain only the lactose part of the dairy product, I may be OK taking lactase. I am certainly willing to give it a try! Thanks again. :)

Malaguena25 profile image
Malaguena25

Yes I've heard of them before! I used to take only 6000FCC when I lived in Germany so I figured that 12500FCC is plenty for me already and they are much cheaper. I think they only cost 10.99 while Lactojoy are something like 17. But it really depends what strength someone needs, everybody is just so different :)

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