LDN makes me angry?

Hi

3 weeksago I started LDN to help with Hashimotos. started as advised on 0.5 for 2 weeks, then inc to 1mcg for 2 weeks.

I noticed after increasing that I was getting totally enraged for a few hours after taking the LDN. So after 4 days of anger I dropped dose back to 0.5 - but still getting anger.

Is this a normal reaction - is my dose too high or to low ?

Grateful for any ideas or comments

Thank you

14 Replies

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  • Hi Daffers, sorry to hear you are having such a negative reaction to LDN. You must remember we are all unique and react differently to medication and even some times to supplements. I have been taking LDN (4.5mg) for my fibro for the past two year and think it works for me. In my case I cannot take anti-depressants - it makes me depressed. I don't suffer from depression but the pain specialist feels it could reduce the pain . He even has prescribed an Alzheimer medication for pain - it doesn't even help with the brain fog lol.

  • Hi

    Thankyou for reply. am glad you're getting on well with it. I wonder if I might try taking it at night instead of morning. I really want it to work.

    you made me laugh (in a wry way) about the ADS making you depressed! my doc has been advising me to try them but when I did (and felt much improved ) it caused restless leg syndrome -so Dr gave me meds for Parkinsonism. ..so I didn't take either! Similar story to your Alzheimers med tho.....

    best wishes

    Andrea

  • Hi Andrea, I certainly would take LDN at night - it made a big difference to my sleep. What it is supposed to do is switch off your good feel receptors for a couple of hours and then your brain or a chemical reaction occurs and it builds new receptor which in the morning gives you more receptors that make you feel good and possibly reduces your pain level. No wonder you get angry because your receptors are switched off for a while. This is the reason why one does it at night while you don't feel it. Initially gives you very vivid dreams as a side effect but it goes away. I have worked out that once I get out of bed I feel like a truck has run me over, but a short while later I am better - this must be the receptors kicking in - maybe the hot shower also helps a lot :::).

  • thank you for explaining that -it all makes sense now. will def try at night.

    how long did you spend building up to 4.5 and did your pain improve gradually ?

  • I live in Namibia, Africa and we only recently have a compounding pharmacy in Cape Town South Africa. My doctor put me straight on 4.5mg from the start. Just a few nights of vivid dreams and I would say I definitely sleep better, deeper than before. Pain I just don't know, because I personally have experienced that my pain is increasing with the years. For the first 24 years I didn't even know what I had and continued to go to the gym all those years. I lived then in Cape town. Moved to Namibia 12 years ago and a German doctor told me that I have fibro. I cannot even walk the dogs for an hour without having major pain. LDN has so many benefits - fights even cancer - that I will not stop taking it. I would have to go off it for a while to know if it helps with the pain. I am trying D Ribose now - have taken it only for 3 days. It is very expensive. I read an article about a woman who has had fibro for twenty years and she says this is one of the best things she has taken for her fibro.

  • Hello again

    fibro sounds the most awful illness - assume it's autoimmune? I feel lucky that my Hashi's comes and goes whenbivread of constant pain. At least I can walk etc. is there no other treatment for you? i am sorry to sound so uninformed. Are you taking ribose as well as LDN ? I used D mannose for years for irritable bladder -found it v good (also pricey) and the supplier also offered D Ribose. must look into it.

    LDN not easy to source here in UK as no one's heard of it - I get mine via phone consult with Dr in Glasgow and compounded up there by chemist he works with.

    I have liquid - think so can get small dose. Tonight am going to try again...

    thank you for your help - very much appreciated. wish I lived in Namibia -it's done nothing but rain here most of June

    A

  • Hi Daffers, I understand and find it can affect me in a similar way. It increases my energy but can make me feel irritable - I presume this is the increase in endorphins but maybe it is the initial drop first? I think that some of us are very sensitive to LDN and a tiny dose helps. I keep low and dont try to increase it much now and if I feel I have felt irritable then I leave it off for a day or two. Some people dont take it every day as a norm. There are few rules - do it as it suits you, maybe at night and every other day? I also feel that it wakes me up, makes my thinking feel better/clearer as well as the energy and maybe that's part of this overall feeling and a bit like getting used to the new you, who is more aware/awake and therefore more easily irritated? I have tried taking it and not taking it and I always come back to it, so Im keeping with it, but low for the increase in energy and decrease in brain fog! Trial and error Daffers but you're doing the right thing, asking here and reading up on ldn so you understand it as well as possible.

    Gill

  • Hi Gill

    so grateful for your comments and encouragment. interesting that you've stayed on low dose as I am so sensitive to all chemicals I think that might be way forward for me. I am taking for Hashis so not in constant pain but lack of energy and brain fog and fetling ill on and off every few dsys are big problems as is depression anxiety etc.

    I hope lots of people post on here - I've been in the thyroid forum for a couple of years and I've learnt so much.

    will try again tonight -thanks to you and other lady I am re motivated! !

    A

  • It's my understanding that treating thyroid issues are tricky, especially in the beginning. Are you also on thyroid medications? The recommendation is that you and your doctor work closely together, monitoring closely. Anger is a sign of too much somewhere, I've seen Hashimoto's tritate up very, very slowly. Take a look at these testimonials from the trust:

    ldnresearchtrust.org/search...

    Hope this helps!

  • Hello Daffers,

    I am sorry for joining this thread so late, but I wanted to say that I have been trialling LDN for a month now, with similar issues i.e. it seems to have increased my irritability and also may have given me pretty severe runs (too much info sorry). I noticed in my reading around this med that LDN can make thyroid meds work better, so I am thinking that the very small amount of T3 (12.5) I take may need to be decreased. From today though, the first thing I will do is just take the LDN every other day (I am only on 0.5) as this is what has been recommended for some ME CFS peeps and please check out my profile if it helps you get a sense of what I am dealing with conditions wise). Now on to the positives, a massive decrease in body pain which has to be a plus and when I'm not feeling a wave of irritability - has helped my mood overall to be more stable. So a slightly mixed and contradictory response but I am sticking with it until my three month initial try-out is up...I don't know how much help this feedback will be as it is so contradictory.I think a lot of the time, we are all experimenting and so I agree with the other posters who say things like, start low and go slow.

  • Daffers,

    I take LDN for rheumatoid disease. Because I am so sensitive to all drugs, I started at 0.5 mg, titrating up every 2 weeks. When I hit 2.5 mg, it began to really work. I twice tried to go to 3 mg, each time, it worked worse, plus I got the anxiety/irritability that my fibromyalgia/hypothalmic hypersensitivity can cause. I've been low thyroid in the past; my brother has Hashimoto's and my sister had Graves. Then in my late 30's, I had some low T3 uptake; stabilized that with L-tyrosine, kelp, phosphorylated B vits (especially B6), & selenium. I suspect in my case that my minor thyroid fluctuations were the result of my hypothalamus malfunctioning as opposed to the other way around.

    Read the LDN book or check out the LDN 2016 conference sections on thyroid. Also, read up on the hypothalamus; it controls much of your brain, including the fight or flight response, connections to the more primitive brain, and via the pituitary, your thyroid. If I'm having problems with maintaining stable body temp, and hot flashes (similar but slightly different than menopausal), I know the hypothalamus is pissed. Your neuroendocrine system is highly complex and integrated, so using LDN with thyroid malfunctions can be tricky...as you see with the other comments (and yourself!)

    I also agree that taking LDN at night works best. In my case, I drink a large mug of herbal calmative teas (including nettle, etc, that act as kidney cleansers.) I wake up to pee about 1 hour into my sleep. I take my LDN then. That seems to be my optimal time. It is more predicated by my sleep cycle than the clock. Right now I'm staying up late for my work (wildlife; owl surveys) which is throwing off my sleep patterns...not good! But I've still found I should take the LDN according to my sleep pattern, not the clock.

    I actually find the LDN is working better when I do have the vivid dreams. I don't see them as a negative, except when they are nightmares! Even then, at least it means I'm sleeping. My worse side effects are insomnia for a couple nights each time I titrated up, or if my sleep patterns are off, or I'm anxious/irritable/stressed (highly political job), plus the loose stools that others have mentioned. (substituting rice flour for lactose as the filler in my LDN helped, but didn't solve that entirely) If you read up on the hypothalamus, you can see how these symptoms are linked.

    Good luck!

  • Hi and thank you for all the information. I appreciate it and will research hypothalamus as yiu suggest. I am so glad to hear it's working for you. I am hoping but will control my anti bodies etc.

    was there any particular way you knew it was working -ie were you in constant pain which then improved?

    sorry for delay in replying but just got husband home from hospital

    best wishes

    Andrea

  • Andrea,

    Re: how did I know it was working: See my posts on NRAS community. Both symptoms and blood tests. But yes, reduced inflammation, pain, cog fog, and fatigue were the immediate improvements. Others, such as improved mood, sleep, mobility, flexibility, and blood tests took longer. I don't think my LDN was chiefly responsible for my particular problem antibody (ACPA) improvement, but it may have assisted the undenatured collagen in knocking it down.

    During the LDN conference, the two GP's were asked "what do you do if LDN quits working after a while." And both replied, "look at diet, look at lifestyle." MS, fibro, RD, thyroid conditions, and others are susceptible to stress, due to the association of the hypothalamus etc with endorphins and the immune system. LDN works on those endorphins every night, but it can't overpower too much negative stimulus. So if tough things are happening in your life, not getting enough sleep, and (as you mentioned) loved ones in health crisis as well, LDN may work differently or not as well.

    Some folks have mentioned bumping their dose up or down, skipping a day, etc to deal with that. I am better on a daily fixed dose, but on other supplements (turmeric and pepper, for inflammation, for instance), I'll vary the dose (or only take it occasionally) by what my body needs that day/week.

    Also, LDN is supposed to have about 16-18 hour maximum effectiveness. I felt this at first, seemed to "sunset" and hit a fatigue wall at about 4 pm when I was taking it at 10:30 pm. When I switched to about midnight, I'd sunset about 6 to 7 pm. It took about a month for the sunsets to stop. Now I just get "normal" tired at the end of the day. So I think there is some build-up or body memory with LDN. On the other hand, I felt better very quickly when I dropped from 3 mg to 2.5 mg. And when I have missed a dose completely (several times), I felt OK that day, but the next day, having taken LDN the previous night, I had moderate side effect whiplash! (The day after that I was fine, but I'm a lot more careful not to miss a dose now!) Have you noticed if stopping or going very low or alternate days for a bit allows you to take 0.5 mg with less irritability or actually accentuates irritability?

    Some of us are hyper-sensitive to virtually any drug we take. We often get side effects before or greater than benefits. The flip side of this is that relatively small amounts of drugs or supplements can help us, and often food or whole supplements or lifestyle "fixes" with milder or positive "side effects" work quite well for us, too. I've used this to manage my MS for over 30 years with only diet, mild supplements, exercise/yoga, and lifestyle. I am still relapsing/remitting and mobile. The RD, on the other hand, was trying to kill me, so diet and supplements weren't enough. But due to my hypersensitivity, I figured that LDN might be enough that I wouldn't need mainstream drugs. I am so lucky that LDN has done wonders and appears to be sufficient, at least for now.

    Use all these clues to help you. Work with your medical practitioner on this; I found one who had LDN experience and she has been essential in guiding my titration. I believe there is a Goldilocks dose for LDN for each person, and for some folks, sometimes for each day!

    Good luck,

    Julie

  • Der Julie

    Thank you so much for your reply and advice. I will certainly look at your older posts as you suggest. I feel ready to have a nother go, and as soon as my husband picks up a bit (had major vascular surgery) I will start again. In the meantime I will read as much as I can

    Best wishes

    Andrea

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