Anyone up on cost of LDN? : I'm trying 2 find out... - Thyroid UK

Thyroid UK

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Anyone up on cost of LDN?

lesleyfromkent profile image
10 Replies

I'm trying 2 find out cost in advance of paying for it, plus private prescription. Dickson Chemist - tried but my phone won't work with their pvt appointment booking system, apparently this is my fault, and it's only me, so I either buy new fone or give up. I've given up.Rose way are drowning me in words. Their initial consultation cost is 30 quid, ie affordable but not so affordable if monthly and I'm having difficulty getting this out of them. And although I've asked medication price at "full" ie after titration from 0.5mcg a day to 3mcg a day, all I'm getting is "we need dosage level first."

I just need an idea of how many pvt prescriptions per year I'll have 2pay 4 and monthly dosage cost at 3mcg a day. Not a quote, just a guesstimate. . And of course it might do nothing for me and cost would then be irrelevant! (CFS/ME).

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lesleyfromkent profile image
lesleyfromkent
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10 Replies

I use Roseway atm, it cost £30 quid for the initial consultation, the prescriber left two repeat prescriptions for me at no extra cost. The LDN cost £65 quid for a 90ml bottle, which initally lasted over 3 months, however I was only on 0.5ml daily. Its a slow titration upwards. Now, nearly 6 months in I take 3ml, with an aim of eventually settling on 4.5ml for Fibro. So obviously the 90ml bottle will only last around a month. LDN also comes in capsules and sublingual drops in different strengths.

I'm thinking of switching to Dicksons as they quoted me £28 for the liquid/capsules for a month's supply. The kicker for me is that every few months they want to reissue the prescription so an additional £30 for that. But Roseway are the same. Its a nice little earner for them.

There's also Clinic 158, think they might be affiliated to Dicksons. Its a shame we cant get it on the NHS. Some GP's might prescribe it on a private or trial basis. Might be worth asking. Annoyingly if you can self source the tablets its really easy to make the liquid yourself.

Alanna012 profile image
Alanna012 in reply to Sparklingsunshine

Thank you for this info sparkling, is tge LDN working and helping with your fibro symptoms?

Sparklingsunshine profile image
Sparklingsunshine in reply to Alanna012

Its hard to say for sure, I got diagnosed with chronic vestibular migraines last year which cause dizziness, vertigo and imbalance, as well as the usual gift that keeps on giving migraine symptoms. Light sensitivity, nausea etc. After several attempts on different migraine preventatives I started taking Venlafaxine in January. Just a couple of weeks after starting LDN. Venlafaxine is an antidepressant, similar to Duloxetine which is commonly prescribed for Fibro.

Its stopped the migraines, haven't had one in months. My balance hasn't recovered though but is better. I've had more energy, far less pain and stiffness for sure but I'm only on 3ml daily of LDN. 4.5ml is the usual daily dose for Fibro.

Its hard to seperate the effects of the two meds really. I guess stopping one would be the only way to know for sure. But I'd like to continue with the LDN. I'm hoping I can get off the Venlafaxine after a year.

Alanna012 profile image
Alanna012 in reply to Sparklingsunshine

I'm hopeful for you! Please do update if it continues working after stopping the Venlafaxine.

Bertwills profile image
Bertwills

I take LDN sublingual drops prescribed by Clinic 158 & supplied by Dicksons Chemist. I paid £100 for a annual prescription once I was sure that I wanted to continue taking it for Fibromyalgia & hypothyroidism.

I have found it helpful. Brilliantly so for 9 months, then I got a virus & afterwards the effectiveness seemed less. The advice is to stop taking LDN & then start again at a low dose. This has worked although it’s not felt as effective as it did originally.

Dickson chemist are efficient now but I initially found the system of prescription by Clinic 158 & despatch by Dickson hugely confusing and unreliable. Bottles weren’t despatched when expected etc. Better now with an annual prescription. I did have to pay for a private phone consultation too at first.

You could try emailing Clinic 158, I think I’ve done that before.

wavedancers profile image
wavedancers in reply to Bertwills

Bertwills, I did exactly the same. LDN worked great at 4.5 until I got pneumonia and then all effectiveness was gone. Started titrating again from .5 and have settled at 2.5 six months later. I have Rheumatoid Arthritis, Hashimotos and hypothryroidism. I've found Clinic 158 confusing as well, but after an annual script, all is well and get 3 delivered at once each time. Only wish they would do T3 Liothyroxine...

seveneleven profile image
seveneleven in reply to Bertwills

Sorry to jump onto an old post, but just wondering Bertwills how much do you pay for the sublingual drops from Dicksons? (assuming the £100 is just the cost of issuing the annual prescription and not the LDN itself) I'm booking in with them but wondering if there's a big difference between liquid and sublingual because I've got a very troublesome gut.

Bertwills profile image
Bertwills in reply to seveneleven

Hello, yes, the £100 is for an annual prescription though they never explained that to me & I thought it was for the LDN! It’s been a bit chaotic with them but we got there in the end!

I don’t remember exactly how much each month but it’s between £20 & £30 depending on postage., Also don’t remember the difference between sublingual & ordinary drops, not much I think. 1 thing I’ve learnt is that the taste can vary greatly. Some mixes are fine sometimes horrible but I really couldn’t tolerate the drops or capsules so sublingual it has to be.

I think it’s worth it. 🤞

seveneleven profile image
seveneleven in reply to Bertwills

Ah, that's helpful to know, thank you! Yep, if it can improve anything at all, I'll take it at this point!

Bertwills profile image
Bertwills

Hello, it’s strange how an infection can stop LDN being as effective. I don’t understand that at all. I’m now on a lower dose for awhile but I don’t feel that it’s helping as it once did. Still every little bit helps as they say!

I tried to get them to fill my T3 prescription but didn’t get far. They said it would be too difficult & expensive so I guess they really do specialise in LDN only. Certainly one of the most confusing businesses I’ve ever dealt with. I’ve no idea why, maybe they’re getting too busy as word of LDN spreads.

Hope things improve for you soon. Xx

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