LDN help

Anyone taking this ldn . I am very interested in trying this as I don't feel any great improvement on t3 plus t4. Do you stop all tyroid meds an just take the ldn ? My endro has asked me to get some info as he is very willing to let me try but he stressed that he would research the drug first . I am going to see him soon an would appreciate any info on others taking this . Thanks in advance for any info on this 😊

14 Replies

oldestnewest
  • Snooze, I believe LDN is taken to dampen Hashimoto's and is taken in addition to thyroid replacement.

    honestmedicine.com/

    hypothyroidmom.com/most-doc...

  • Oh right thanks clutter fir links I don't think I've hashi anymore my antibodie high around 600 but endro mentioned genitc because I've no goiter its atropified I'm wondering did he mean ords 🤔

  • Snooze, Not every Hashi patient develops a goitre and high antibodies means you still have Hashi's which eventually atrophies the thyroid gland.

    ____________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Hi Snooze.

    At lowdosenaltrexone.org you can get a lot of information about LDN.

    You can also join the fb group LDN research. In their files there is an information page for your doctor too.

    What I have read is that you must monitor yourself closely to avoid going hyper, because LDN can diminish your need of medication. No need to stop the medication before.

    I have an app. tomorrow and hopefully will start LDN for FM. Very exciting!

  • Thanks so much for info . Realy hope it works for you . My hubby has been on it for 9 years for progressive ms an it defo has slowed down the progression he gets it from a neurologist. Thanks again as I need info on hashimoto my endroconoligist never heard of it for tyroid . To be honest we've never Realy looked into it my hubby was recommended it an had just been taking it ever since Good luck with it an il look at the link 👍

  • Lots of people with MS have very low levels of B12 and VitD - has your hubby been tested ? Both need to be at the top of the range - not just IN range. Obtain copies of any results and post here for people to comment if appropriate.... ( in a new post )

    I have suffered with de-myelination of the spinal cord due to low B12 - similar to what happens with MS.... Now have weekly B12 injections. Not saying it is a cure - but it can help to relieve pain and symptoms.

    Have also pondered LDN :-)

    healthunlocked.com/api/redi...

  • Thanks hubby has secondary progressive quite advanced but I will get the surgery to send someone out to get those tested . Thanks again 🌸

  • Hi

    I have ME and fibro and hypothyroid. I started LDN in June working up very slowly 0.5 mg each week to my current dose of 4.5 mg. It hasn't been a miracle cure but I do feel I am sleeping better and have some more resiliençe.

  • Ah you didn't get of lightly that's awful you have all of those . I Realy hope it continues to help you . I am waiting to see a reumatoligist because I have symtoms of fibro but I think along the lines of me my muscles r weak jelly legs an if I pinch my skin the pain is awful but it seems to be in a diff place every few days . Today I can hardly touch the inside of my calf muscles so many strange symtoms . Nitemare as I'm sure you know . Thanks for your reply sorry for the long winded post it's just I've a 65 wait on the nhs to see someone 😓 Thanks again 🌸

  • Thanks Snooze, I hope you feel a little better soon. I think all of the 'disease labels' I've been given are due to the same underlying dysfunctions in the body, starting in my case with disturbed gut microbiota as a baby, made worse by countless numbers of antibiotics as a child and adult. I'm currently watching Dr Sarah Myhill's videos on ME, which are great in trying to understand what's causing my ill-health. They are available free at Dr Myhill's website at:

    drmyhill.co.uk/wiki/Biocare...

    I have to listen to it in chunks, as my concentration goes. It's long, over 5 hours in total, but I find it really helpful in understanding why I have so many apparently unrelated symptoms.

    It's important to keep in touch with doctors in the NHS to ensure you haven't developed some disease/condition not related to fibro/ME/hypothyroid spectrum, and so that you can get a medical report when required, but for the 20 years I've been travelling down my healing path, I have found them utterly useless. In fact, most of the drugs and treatments they prescribed for me made me worse. Graded exercise programme set me back about a year as I tried to recover from it. Proton pump inhibitors for alleged excess stomach acid set me up for more gut infections and an inability to properly digest my food and absorb my vitamins and minerals, non-steroidal anti-inflammatory drugs damaged my gut lining and made my symptoms worse. I got the LDN on a private doctor's prescription from overseas - it may be the only exception that did some good!!

  • Oh I agree 100 percent with you . We need to be careful something else isn't missed when we get labelled. I have an app with my endro in Dec I will take as much info as possible. I will have to go private to see a reumy as 65 weeks is just not on . Thanks again I will check out that video . Hope you have a not to bad ... Day 🌸

  • If you don't mind would you know which consultant I would be better to see private reumatoligist or neurologist to try an find it about my symtoms it's just I can't wait for 65 weeks . Thanks

  • Hi Snooze

    I think a consultant rheumatologist is usually the best to diagnose fibromyalgia, but try and find one with an interest in the condition, as you may need a medical report from him/her at some stage, and it would be better to have one from a dr who understands the severity of it and is knowledgeable in its management.

    Different medical specialists (consultants) can specialise in / have a special interest in ME/CFS. Sometimes it is an immunologist, sometimes a neurologist, sometimes a general physician with an interest in ME, or, and probably best avoided, a psychiatrist.

    If you check out your local patient support groups for fibro and ME, they may be able to provide you with a list of sympathetic and/ or knowledgeable local consultants in your area.

    Good Luck!

  • Thank you so much for this info much appreciate your time .😊

You may also like...