Low dose naltrexone

Hello everyone,

Can anyone who takes LDN for hashimoto's tell me if they can return to eating gluten and still have lowered antibodies from the LDN?

It's not that I'm in any big hurry to get back to eating gluten by choice, I actually think maybe we are  better off without it even if we don't have a problem with it. but it would just be nice to not have to worry once in a while when I fancy a take away or go out for a meal.

32 Replies

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  • Can anyone tell me where, aside from a doctors prescription, they source LDN? My winter fatigue is still appalling and I have seriously considered taking this (I have a sister with fibromyalgia as well as hypothyroidism) just to see if my gross winter fatigue would be helped. 

    DonnyJam, I don't eat gluten or even grains... not because I think I have an allergy or sensitivity (but to maximize health opportunities re several relatively serious issues), so wouldn't consider wanting to obtain LDN because 'I fancy a treat once in a while', lol... to each his own ;-)  Hope you get some replies on this.  Best wishes x

  • Thank you Marz. 

    Has anyone on here tried this or such a place? 

    Anyone on here found a good Functional Medicine doc? 

  • It is not advised to buy LDN online. The LDN Research Trust made a trial and ordered LDN from 6 different places. The quality of most of the products were very poor. 

    It is good to bring your GP information about LDN since most doctors don't know about it.

    There is 'information pack for your doctor'  you can print or just ask him to check the websites  

    lowdosenaltrexone.org

    ldnresearchtrust.org (information pack for your doctor)

    ldnscience.org

    ldnnow.com

    ldndoctor.com (online prescribing doctor)

    BTW there is no reason you could't have a treat when on LDN. 

    Only contra indication is opioids

  • Of course we would all prefer not to have to buy our own meds at all, but when you're stuck with a GP who won't do anything about anything you have little choice. 

    I would never have believed I would have been forced into buying my own NDT as I was refused any treatment at all.

  • Maybe it's time to change GP?  But on ldndoctor.com you can get a prescription from a doctor. 

  • Thanks

  • Thank you rsae56 - this may make no difference, it could make me worse [doubtful ;-) ] or it could be just that missing link... in the absence of any healthcare for the last decade+, I have to try to do the best I can for myself. Be well.

  • That's US patients only.

  • Thank you HeirloomApple I missed that important detail! 

  • Exactly HarryE, I went to docs for years with no one listening... I looked like the before and after pics of 100+ years ago, had a list of signs/symptoms (having previously been 'forced to attend the GP's' because I hadn't been for years, i.e. not a regular). 

    I've taken a Health Family Tree to endos... showing the links - no one wants to know - just their little blood tests: I simply don't fit within them.  I had a TSH of 3.8 and even at 2.8 felt like rubbish... Dr S and Dr P both diagnosed me in 2010 and, following a duff batch of NDT, I was prescribed by my GP.  Without testing and without guidance, I didn't take enough Armour [apparently we have to reach our 'sweet spot'], so have ended up on T3 alone, which works very well, except when its really cold.  Yeah, have to pay for it... Armour from the USA used to be a lot!  Be well :-)

  • Hi Harry, do you buy your LDN online ? :)

  • Thank you! 

  • Thanks for the reply.

    I wouldnt be buying LDN, rather Naltrexone and making my own LDN.

    For want of a better way to put it, my GP is a complete arse hole, just the other week he tried telling me he'd never heard of T3 in drug form?????? I had to laugh at him and then he googled it?????? After that he agreed to ask the endo if I could go on T3 so that I could reduce my T4 and guess what? The endo said no because testing has showed no benefit for people to take T3 along side T4 and gave a load of load of bull crap speel about my ranges being perfect as they were....

    So chances are my GP will screw his stupid little face up and tell me I can't have LDN....

    So there is no flare when you consume gluten? and if LDN has returned antibodies to normal ranges they wont be effected by gluten intake ?

  • Donnyjam I asked my pain doc to give me naltrexone which I dilute myself. It is simple and easier to change doses as well. 

    I don't have Hashimotos though, just low T3. I self medicate with T3 (Tiromel) with my GP's accept as he 'couldn't' give me since my TSH wasn't elevated, but just in the top of the range. 

    I eat gf because I'm tested intolerant to wheat  

    Sorry if I misunderstood your question about having a treat. I can only tell that if I have eaten gluten (in wheat, oats) , I get a reaction like swelling and feeling rubbish. 

    Have you been tested for intolerances? 

  • I choose to avoid gluten because I have hashimoto's. LDN in my case should stabilise my immune system which is why I asked if LDN allowed someone with hashimoto's to return to eating gluten with any autoimmune flare ups. I'm going to trial LDN and then try to get my antibodies rechecked in a few months to see if things have improved.

  • Thanks for the reply.

    I didn't mean I only want to take LDN so that I can eat gluten as a treat.

    I want to take LDN because it balances the immune system out and stops hashi flares which can be quite uncomfortable.

    Since I went gluten free, when I consume it by accident I seem to have reactions to it that I never had when I still consumed it regularly.

    I had tea round at a friends house the other week and just didn't think about what I was eating before it was to late and the next day I was having hot flashes all morning and woke up with painful joints like I had the flu, I never used to have joint pain from eating gluten before I went GF.

  • Apologies DonnyJam... what I said was tongue in cheek ;-)  and your own reasons (immune system ++) are those of my own.  I do get exactly what you're saying... something we haven't had for a while and before you know it, something reacts.  Just great to hear you've had your own tried and tested confirmation that it is gluten giving you problems.

    I am sorry, I wasn't having a go - there's enough out there do that to us.  Take care and be well - hope you can get some LDN xox

  • Thanks for the apology,

    I wasn't entirely sure if you were being off anyway but I felt I should clear up my intentions.

    Anyway no hard feelings and thanks again for taking the time to reply.

  • I have one particular cousin who will say, "Just my sense of humour" and I think, really!!  Apologies again... it was early too.  No hard feelings anywhere, except with endos! ;-)  Take care.

  • I take LDN now, as a preventative really. But before I started my antibodies came down from almost 2000 to normal range after a year just on NDT. I didn't change my diet at all, I still eat gluten & it has no effect on me - thankfully

  • HarryE, can you please message me as to where you get it from?  I'd be really grateful.

  • I am going to start LDN soon at 4.5. Were you on that level when you started and did you have any side effects?

    Do you take it at night?

  • It's recommended to start low & build up gradually. I started very low, 0.5 I think. I got very vivid dreams, which is a commonly reported thing

  • Thanks. That's what my doctor told me but she said she starts her patients at the higher dose and they generally report having difficulty sleeping the first two weeks and then they are fine.

    I may ask if I can start by taking it every other night.

  • Some do well on startig 4.5 mg LDN but for the majority it can give problems/side effects that can be discouraging. It will be wise to start low fx 0.5mg and increase every 2-4 weeks according to how you tolerate it. 

    I started at 0.5 mg and after almost 5 months I'm at 3.5mg. 

  • Can someone messsge me how to buy naltrexone to mske own LDN from please

  • I have fairly recently started taking LDN and so far the results are looking promising. I get a private prescription from a clinic in Glasgow which is made up in a pharmacy in Glasgow.

    I was told by the pharmacy that hundreds of GPs up and down the UK prescribe LDN on the NHS. But these enlightened, courageous and patient-orientated creatures are still, percentage-wise, very thin on the ground.

    But here's the thing. My lovely consultant in rehabilitative medicine suggested not once but twice that I purchase the drug online since it was unnecessary to pay the frankly exorbitant price of private prescriptions here. He told me that several of his patients have tried it and not found it useful, but those who do enjoy improvements buy it online. But he's an NHS employee and feels unable to prescribe a drug that is unlicensed by the NHS.

    As far as I can ascertain it seems that there was an historical case when a batch of the drug was not as strong as it should have been, but that seems to have been down to certain unscrupulous suppliers. And it looks like the sites stating that you should never buy it online are linked to the doctors who prescribe and the pharmacies that dispense.

    The base drug Naltrexone is very cheap to manufacture and therefore very cheap to compound - or dilute to strength and flavour as a liquid, with god-knows what (I like the flavour, actually! It's like sweet liquorice.) In other words, the mark-up is quite interesting. To buy the drug online from a reputable pharmacy in another country works out at around £16 per month for the drug and no nice-work-if-you-can-get-it prescription charge of £30 for 3 months (with or without a peremptory 'chat' with a doctor).

    So I guess you pays your money ... What I will be doing is to continue with the prescribed drug, which works out at £30 per month, until I reach the dose of 3mg per day, when the price jumps to £40 per month and then buy online. The only reason I'm paying the ridiculous fees, for a 10 minute and virtually irrelevant chat with a doctor over the phone and for the pharmacy to dilute the generic compound, is to just have back-up whilst slowly upping the dosage. Once I feel confident I can manage it myself (and I have to say, as my confidence grows I'm getting to that point more quickly than I originally thought I would) I'm going to dry up my cash-dugs and drop the doc.

  • Sorry - that should read for a month's supply, around £4

  • Have you actually taken gliadin antibody and tissue trans glutaminase tests?  I sure wouldn't risk any gluten if those tests say you are sensitive.

  • I dodge gluten because I have hashimoto's and gluten protein is very similar to the protein in the thyroid tissue and I believe some other parts of the body like the brain so when gluten is consumed it causes an immune response which causes the thyroid to be attacked by antibodies.

  • I haven't had my antibodies tested since being on LDN but I continue not to eat gluten because it's just bad for everybody to eat. I know one person who eats gluten only when she hasn't any other options available and she says she's ok, she's not on LDN, but is doing the autoimmune Paleo diet. 

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