Joined a very large group on facebook with over 43,000 members with hashi's, recommended to me by writer and sufferer izabella wentz whose book i am reading.

Spotted a post from a fellow sufferer who mentioned that LDN had helped her tremendously in calming her immune system/antibodies down. Did a quick search on it and it appears to be a well known cancer treatment but is also prescribed for many other ailments.

Never heard of it but wondered if anyone had and tried it?

13 Replies

  • healthunlocked.com/search/l...

    It has been discussed quite a few times on the forum - hopefully there will be something helpful in the above link.


  • Jefner can I ask which group you joined (pm if you prefer)? I joined an fb group but the admin's behaviour was bizarre so I left. Would be good to be in a helpful group.

    I've been on ldn since the summer. I can't say I notice much difference but I haven't had my antibodies tested in a long time. They were always high despite strict gf diet and otherwise very good thyroid numbers (t3 and t4 were high in the range). I think it's one of those things where the effects are subtle and I might not realise what it does until I stop taking it.

    If I forget to take it for a day or two and go back to it or when I raise the dose it gives me gut problems, so just be aware. I think because it needs to be refrigerated (so I can't keep it by my bed) it can be hard to remember to take it, so I put a reminder in my phone. Aside from that it's fine - easy to get a script, not prohibitively expensive, manageable side-effects, worth a try.

  • Have u not found out why your antibodies are so high. I started gf couple weeks ago

  • Well I assume it wasn't gluten. But not sure how else you can find out - ? I think it is just the autoimmune response - ?

  • I don't have a smart fone reminder app,so I have a flashcard on the stairs.I often forget I need to take LDN,as I go up to bed.The flashcard works for me!My memory is very poor,now

  • That's a good idea! Anything that can remind me before I get upstairs. Once I'm up there I don't come down for anything short of a real emergency!

    I don't have an app as such but there is a calendar that does daily reminders. Of course I'm usually busy doing something when it goes off and I often postpone taking my ldn until I finish, which means I forget to do it anyway. What I need is a reminder that does it for me. :-)

  • If you search for a member MaryF - I am sure she has a wealth of info as she does take LDN too. She has multiple autoimmune conditions.

  • Thanks hun, just more curious about it at mo

  • Weaned myself off T4 slowly from end of May & onto T3 only.Initially followed the CT3M protocol for exhausted adrenals.Now converting to once a day dosing.Dosing twice daily at present,bigger dose at 5.30am

    Started taking liquid LDN at lowest daily dose(.5)end of August.Now on 1.5 & gluten-free for a few weeks.Taking B12,folate,B6 in the methyl form.Taking D3 with K,iron with C.

    I've got 17 years on thyroxine to improve from,but positive results so far.

    Decided to go on to LDN because the last 4 years on thyroxine was experiencing chronic fatigue in addition to depression & anxiety.

  • I asked GP about prescribing LDN for my fibro symptoms (before autoimmune thyroiditis diagnosis)... Hit a brick wall; he said it wasn't for off-label use! Could I ask how it was procured by those taking it?

  • Jobeth, reply or PM to those taking it. Jefner as the original poster is the only one who will get a notification about your question.

  • My GP had agreed to prescribe T3,thanks to the local endo being clued up.I didn't want to "rock the boat"So after getting a letter from the GP practise to state I had Hashi's,I followed the route used by a friend with ME.A prescribing chemist supplies me.I use their recommended Dr for a private prescription.

    Pm me if you want more info

  • Joburton - if you check out the link I posted higher up - it will take you to the site with all the info you need :-)

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