LDN: Joined a very large group on facebook with... - Thyroid UK

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Jefner profile image
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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?

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Jefner profile image
Jefner
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Marz profile image
Marz

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.

lowdosenaltrexone.org/index...

puncturedbicycle profile image
puncturedbicycle

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.

Jefner profile image
Jefner in reply to puncturedbicycle

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

puncturedbicycle profile image
puncturedbicycle in reply to Jefner

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

Naomi8 profile image
Naomi8 in reply to puncturedbicycle

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

puncturedbicycle profile image
puncturedbicycle in reply to Naomi8

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. :-)

shaws profile image
shawsAdministrator

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.

Jefner profile image
Jefner in reply to shaws

Thanks hun, just more curious about it at mo

Naomi8 profile image
Naomi8

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.

Joburton profile image
Joburton

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?

Clutter profile image
Clutter in reply to Joburton

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.

Naomi8 profile image
Naomi8 in reply to Joburton

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

Marz profile image
Marz in reply to Joburton

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

Larochka profile image
Larochka

Follow Izabella Wentz, lots and lots invaluable info on the topic!

thyroidpharmacist.com/artic...

m.facebook.com/ThyroidLifes...

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