Low dose Naltrexone: Hi, chaps; got the go-ahead... - Thyroid UK

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Low dose Naltrexone

Schenks profile image
17 Replies

Hi, chaps; got the go-ahead from my lovely lovely ME consultant to try low dose naltrexone. Who knew it isn't licensed? Can anyone pm me with a recommendation for a trustworthy source for its supply, please? Would be very grateful.

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Schenks profile image
Schenks
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Marz profile image
Marz

ldnresearchtrust.org/LDN_Pr...

They do have a Newsletter full of positive news too. Am sure you will find the help you need.... great news you have support too :-)

Schenks profile image
Schenks in reply to Marz

Cheers, cherub. Yep, he's lovely. And on the NHS. He makes the endo look like a real bit**. Not that she needs much help!

Schenks profile image
Schenks

Nice link from Marz thanks. But not a source for supply - anyone any advice on where to buy it without a private prescription?

Marz profile image
Marz in reply to Schenks

I think if you speak/e-mail with them at LDN research they put you in touch with the appropriate Pharmacists..... I only am aware of this as I was almost there myself as I have both Crohns and Hashimotos :-) - and all the way from here in Crete. So you do not have to be local to the source....

Schenks profile image
Schenks in reply to Marz

That's one, thanks.

susymac profile image
susymac

You cant buy it without a private prescription, It's a prescription only drug, although a few places do a consultation with prescription specifically for it. You wont get in on the NHS either. You cannot legally import it, as you can NDT or T3 as it is a controlled substance.

Schenks profile image
Schenks in reply to susymac

Gotcha, thanks.

Schenks profile image
Schenks in reply to susymac

Just an update - it turns out that Nalrexone (as in LDN) is legal to import. It isn't a controlled drug, but it is not licensed.

Agapanthus profile image
Agapanthus

As far as I know (unless things have changed in the past year or so since I was on LDN), Dicksons chemist in Glasgow is the only pharmacy where you can get LDN made up to your prescription in the UK. They will post it to you once a month as needed.

Actually it is possible to make up your own LDN from the Naltrexone tablets by adding to water, that theoretically any GP can prescribe as it's on their list to give to people trying to come off alcohol (even has a NICE guideline). However these tabs are a massively high dose (ie not LOW naltrexone) so you have to know what you are doing in order to dilute it, but it is done by some LDN users as is much cheaper if not getting it from the NHS. However Dicksons disapprove of this method, and do not dispense in this manner. I did try this method myself before trying the Dickson's prescription. Unfortunately I was unable to tolerate LDN for my own ME, but I wish you well with it, as it helps some people.

Schenks profile image
Schenks in reply to Agapanthus

Did I thank you for this - if not, I really appreciate it. Am still trying to get the so**ing tablets!

Agapanthus profile image
Agapanthus

Hi Schenks. I am shocked to hear that you are still trying to get LDN. Is it that you cannot get it dispensed, or you cannot get the prescription? Dicksons are still dispensing it as far as I know? Yes, just checked and the site seems to indicate so...

dicksonchemist.co.uk/LowDos...

If you are having trouble getting a prescription on the NHS (which would not surprise me as that IS usually tricky) - it's relatively cheap to get one privately. Instructions are on the Dickson's site - let me know if you cannot find that bit and I can search for the links. I seem to remember that you only needed to speak to the private Dr on the phone.

Schenks profile image
Schenks in reply to Agapanthus

Hi, Agapanthus. Thank you for the info again and for remembering I had asked! It's a s**ding nightmare. I contacted Dickson's after we 'spoke' the last time and they gave me the information. Their doctor - whose name I forget but will get again when I work at getting the s**ding script from them, told me what to do. To start the ball rolling to get the script from the private doc I need a letter from either my GP or the specialist to say that I am being treated for such and such, and that I have the approval of God - sorry, a doctor, to try LDN, in which case the private doctor acting for Dickson's will take me through the process. And that's where the cr*p started.

It's really 'f-off' by attrition. My GP won't give me a letter because she knows nothing about the conversation with the specialist who I'm not sure has even written to her at all. So I rang my specialist's secretary to explain that I simply needed a letter to say ... (what Dickson's had told me they needed) ... and could she please pass this on to Dr God. Nope. It seems it was far too complicated for her little brain to get round (meanwhile I had to sit through her telling me about her husband, his illness and his intractable nature which prevents her from returning to Australia which she will do in a flash if only he would just die - and don't vote for Corbyn because he's a Commie - and I'd only asked her how she was ... but got to keep the secretary's sweet or they will deny you access to God in a heartbeat). She said she'd get God to ring me.

Who knew that God would try to ring on a Sunday ... evidently the Sabbath was only made for man ,,,, Of course, my phone was switched off. And he never tried again. And then the secretary was off sick. And then I finally managed to get through to her two weeks ago to ask for his email address. I emailed him, rang her a week later to see if he'd got the email and was told he'd been off for a week with a serious bout of 'flu. A week on and I'm still waiting. To say I'm pi**ed off doesn't quite cut it, to be honest. I'm really, really tired of fighting. Will ring the cassowary again (she's only there a couple of days a week) - but one doesn't want to p*ss off either the secretaries or God. What do you do?

Sorry for the diatribe. :(

Will let you know what happens - if anything. x

Schenks profile image
Schenks in reply to Schenks

Actually, s*d it. I'm going to email him again right now.

Marz profile image
Marz in reply to Schenks

I went through the process of applying for an LDN prescription. I had to tell them the condition/s I had - who my GP was - but did not need a letter from a Doc. They have their own Docs that grant a prescription - I will hunt out my old e-mails :-)

Schenks profile image
Schenks in reply to Marz

God (the real one, if there is one) bless you.

Marz profile image
Marz in reply to Schenks

Had a hunt - think I must have had a clear out :-( Check out the website I posted above again - and have another look :-)

Schenks profile image
Schenks in reply to Marz

Website above only offers one contact - in London, naturally! But all I need is this blo**y letter which I WILL get, and was promised, and then Dickson's in Glasgow will be able to provide the drug. Thanks anyway, kid.

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