Has anyone heard of LDN(low dose naltrexone) or is anyone taking it???

[scottishkitty]

I have just read an article about it and would love to know more. I have now given up on doctors and feel like i have nowhere left to go but self medicate

[HarryE]

There is a new HU group for LDN, and this is a good website ldnresearchtrust.org/

I have just started it for my very high thyroglobulin antibodies, but it's early days yet.

[Hidden in reply to HarryE]

Good luck with that Harry, let us know how it goes.

[scottishkitty]

Thanks for the link harry x do you have to go to a private doctor to get it prescribed?

[HarryE in reply to scottishkitty]

It does need a script, most in the UK are filled by Dickson's in Glasgow. The website above has links to where you get a script, or drop me a PM.

[susymac]

I'd love to give it a shot, I asked my GP if she would consider it a while back but got an unsurprising no. I gave her the printed off stuff from dicksons but it didnt make any difference. Another case of the poor not being able to afford to feel well :/

Ive heard good things about it though, so hope it works for you , fingers crossed

[gabkad]

I was taking 4.5 mg naltrexone last year for neuropathic pain. It helped for that. It doesn't helps with musculoskeletal pain though.

I don't have any autoimmune issues so can't help with that. It had no effect on the blood tests for thyroid. Some people claim it gives them bad dreams. It had no negative effects on my sleep nor on dreams.

[JemBron]

The Thyroid Summit featured Julia Schopick who talked about LDN

The website is HonestyMedicine.com

She also said she is always happy to receive emails from people who she might be able to advise.

[e-mail]

[Agapanthus]

I was on LDN when on T4 only for a year and came off last March when I decided to try T3 only (I was lucky to get that via an NHS endo). I have been unable to get LDN via the NHS though I have asked my GP twice now.

The price is very reasonable for a private drug (around £19 per month minimum), but unfortunately I have been unable to tolerate it orally so have to use the more expensive option which is transdermal. This costs me around £27 per month, though as I am unable to take the full dose yet, less at the moment.

I am just retrying it (about 3 weeks) to see how I do with the T3 only. However this time I am having more problems re sleep issues with it, but am on a small dose and will hopefully be able to build up with time. You really have to stick with it for months to assess progress rather than weeks, as you can still get improvements after 6 mths.

[Hypopotamus]

I've been taking LDN for about 18 months now. I started taking it as there were reports that it could help M.E. It doesn't appear to help the my M.E. but, unexpectedly, it did totally remove the arthritic pain I was getting mainly in my hands. So I continue to take it.

My financial situation meant that buying it through Dickson's wasn't an option. So I purchase tablets from a pharmacy in Spain, dilute them with purified water, and use that. It appears to work OK with no problems, and really does cost peanuts. No wonder the medical establishment doesn't like it!

[Mabes in reply to Hypopotamus]

I've done the same - took it for M.E. (and autoimmune thyroid disease) and also got it from Europe to dilute in water. Originally I was able to get a liquid form from Spain, but that source dried up. I've been on it for about just over a year and a half. When I first took it, I'd have dreadful reactions (like a herx/detox) but then my body would settle with the dose and I'd only react the next time I upped it.

I've noticed benefits. It helped me to get a deeper night's sleep and I started to dream again. I hadn't dreamt for years. I also had more stamina/stability health-wise. I was hoping it might slow the M.E. progression. At first it seemed to do that, but then I think my thyroid problems and endometriosis problems have gotten in the way of me knowing what's what. I did manage to get out of the house and do a language class and a short professional certificate, both things I wouldn't have managed to do before LDN (and currently can't do).

I'd definitely recommend trying it. I noticed people seem to either hate it, love it or experience nothing notable (in the middle). I'm sticking it as when I accidentally missed 2 doses I had a relapse (this was during my 'good phase'), so it was doing 'something' although I find it hard to quantify.

There is a source of LDN that is, I think, made in Israel but shipped from Europe without a script. It is actually dosed in the low dose - I think they had both tablets and a liquid form. I looked at it, but it's way more expensive than my current way of doing it so I have stuck with my cheaper way. Others might prefer the low dose already formulated if their UK docs won't help.

[Hypopotamus in reply to Mabes]

I'm guessing that we used the same source Mabes. The reason for them stopping the liquid was that the glass bottles got broken in the post. I was miffed at first but the tablets seem to work out cheaper, and it isn't a lot of bother to dilute them.

Dreaming, or increased dreaming, is said to be the only side-effect. I dream a lot anyway so it doesn't make a lot of difference, and the effect gets less as we get more used to the LDN.

[penny]

I have only researched it for a client who has MS. He was buying it and paying quite a lot but had to stop as he couldn't afford it. I advised that he contact his GP who can, and probably should, prescribe it, if not then contact the Glasgow pharmacy as given on the ldn site. For MS it is supposed to take at least 12-18 months for there to be any improvement - it doesn't work for everyone.

[scottishkitty]

Thank you everyone for your input, I just have to work up the courage to try it lol

[scottishkitty]

One more question guys... if I do start taking ldn do I have to adjust my levo (125mg)