Newbie - coming off LDN : Hi, I have... - LDN Research Trust

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Newbie - coming off LDN

Hi,

I have Hashi's and have been using LDN for about 18 months. As I don't want to take anything un-necessary, do you any of you have experience of using LDN, if so, what benefits/problems have you had, and are you happy to stay using it or would you consider coming off it. If you came off it, how did you go about doing that? I can't find anything about this online so I'm looking for some help here! The big change was improvement in symptoms in reduction in thyroid antiglobulin antibodies (from 244 to normal of 28, range 0-34)

Quick personal back story TSH ranges from 1 to 6+, with consistent low/bottom range free T4 and free T3. Not currently taking meds, but hoping to get prescribed. All vitamin markers in good shape. Gf and dairy free and supplementing Selenium, Vit D, K2, Mg, C, Zinc and Copper, Stress B complex. Have the DI02 gene mutation. Have MTHFR gene mutation hence stress B complex.

Thanks, you guys are awesome,

Lyndsay

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Hello,

If LDN is working for you, why come off? I've been on it for over a year. I stopped it when I was to have surgery. Just stopped. I don't believe its necessary to come off gradually as LDN only stays in your body a limited time. I will say that after I did come off of it for about 2 weeks, I felt worse. I don't suffer from depression but, I was slightly depressed and sluggish. I have RA and PBC. Both autoimmune diseases. LDN is supposed to help with leveling out an autoimmune system. Even though this hasn't been the case for me, my diseases haven't worsened. And I feel better since taking LDN. That's enough of a positive for me.

Stella ❤

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I take LDN for Fibro, Arthritis, IBS and TMJ, also have an over-performing Thyroid but docs aren't willing to rx meds for that. After 3 years on LDN, I took a 12 week break, as I was still struggling with mood issues and wanted to see if LDN was making them worse.

The first month was good, no change. Month two was different, all my symptoms came back. It wasn't a surprise as LDN leaves your system in 5 hours and I have 22 years to heal. Most people find the same thing happens, so most of us have to decide if we are going to take LDN long term. With the benefits and few side effects, esp compared to big pharma meds, I have decided to stay with LDN.

Hope this helps.

Michelle

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Thanks for the replies. I'm thinking that it's ok to stay with the LDN for the foreseeable future. I have to get mine privately from Dicksons in Glasgow and as it's not a massive expense compared to some of the supplements or treatments I have taken over the years, I'll stick with it! I've just had word that I can start thyroxine treatment to boost my T4 and T3, so I'll keep going with the LDN and see how the thyroxine works out.

As an aside, do you experience super vivid dreams with LDN? Or is that just me?!?

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That's one of the side effects and I do experience vivid dreams but they don't bother me. I think they are supposed to gradually subside. Maybe Michelle would be able to answer that as she's been on it for 3 years. I don't experience anything else but I am sleeping well on it. I've only been on it for 2 months. Taking it for Fibro.

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I had two decades of insomnia before starting LDN, I had no idea it could be different. The first results for me were being able to go to sleep and stay asleep for about 3 hours at a time (before that I rarely got more than 1 1/2 hours). I remembered my dreams, wow! Can't say if they were more vivid as I didn't sleep long enough to dream before LDN. After 3 years, it's still the same, altho there is a rare night where I sleep 5 hours, feels strange to not know what's going on in my home all night long ;)

Michelle

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Hi,

I have been on LDN for years and it really slows down progression of fibro or all auto-immune illnesses. It also prevents cancer. I went off it because my prescribing doctor went on holiday. I have to have a carrier by air (somebody who is prepared to take the risk flying with my medicine) to get it from South Africa. I live in Namibia and we are not allowed to bring in medicine that isn't approved by the Government. Now I have started again 2 weeks ago and my IBS has calmed down. I will take it forever.

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