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
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 ?
Hello Naturegirl. Just incase yourve never heard of this. I know this is years old but i wanted to comment on your saying antidepressants make you depressed and about your pain. I have spent alot of time researching LDN for my husband and myself here in New Zealand but at the same time Im also researching about Methylation which is a big component of our health and has a big bearing on our immune system which involves autoimmune disease and inflammation. Often the very things we want LDN for too. Its all about how and if your body detoxs properly through your liver. You can under methylate, over methylate or be ok. If you under methylate you have low neurotransmitters seretonin and dopamine which causes depressive and pain conditions and taking anti depressants, which work well for under methylators, because they raise seretonin which helps fix the depression and pain. If you are an over methylator you have high levels of seretonin and dopamine neurotransmitters so giving you antidepressants raises them even more which can make you more depressed and suicidal. So knowing your methylator status can be key to what treatment is right for you in this and many other health conditions. You can google Methylation and MTHFR gene testing and find alot of information online about this. Its a subject known around the world now and taught and incorporated into a lot of medical practicioners and holistic diagnosing and treatment processes. It even involves LDN treatment outcomes. Its an involved subject but well worth researching as methylation is the chemical process that governs every function of the body and it might give you more answers and direction. All the best. Sheron
Hi,
Thanks for that information - I have not heard of it. People always say that I am so cheerful and I really don't get depressed very often - always seeing the good side of everything and everyone - its driving my children up the wall. I have read very little bit about methylation and decided it is to complex for me. However you must bear in mind that we probably do not have the MTHFR gene testing in Namibia or in South Africa - we are usually 10 years behind times . I am 68 years old had fibromyalgia for 36 years and have tried so much that I can no longer afford to experiment with anything. We do not have a Government pension fund nor medical aid to talk about and I will have to work until I fall over. Raised two children of my own with no maintenance from their father. I will however read up more about it and see where it fits in with me. I think CBD oil would be a good solution, but that is also not legalized. Thanx for caring :).
Hello Sheron
I was so interested to read what you said about methylation above. I have had a lot of testing by Great Plains Labs in the US and which showed me to be low in serotonin and dopamine! I also had a DNA thyroid test, which showed I was not methylating well. Also, I do feel better when on a low dose of anti depressant (not SSRI but Mirtazapine/Remeron) which all ties in with what you explained so well in your message above. I had to give up on the LDN again after trying a few weeks ago as it just tipped my thyroid over, even though I had lowered the medication...then I get into adrenal fatigue and gut health!! Round and round we go....
Anyway, I didn't intend to thrust all my issues onto you, but just to thank you for enabling me to tie in the tests, results and treatment.
I hope you have had success with your LDNand research for you and your husband.
Best wishes
Andrea (Daffers123)
Hello Andrea,
I’m on LDN for Hashimoto since August of 2018, started slow.25mg and increase every 2 weeks .05, I take it first thing in the morning, it gave me insomnia before bed. I struggled to find the right dose and increase period, some take it daily in the morning, most daily before bed, for me the increases mattered, if I was taking it daily, after 2 days I had flu like symptoms, had to skip 2sometimes 3 days. I also have had my DNA tested and it showed I have MTHFR. I really want LDN to work for me, as my iron and adrenals were not where they need to be for a thyroid medication I was told. LDN has given me energy, but now I’m 4 mo on it and it makes me tired when I’m takin it in the AM, so I have switched to taking it before bed and every other night.
My sleep is deeper and I didn’t wake up at 3 am. It’s all trial and error for us, I understand, but can’t figure out how to be able to increase LDN, I’m only on .80 mg., very slow increases .05 every 2 weeks..
Since I’m producing both antibodies, my blood work shows some went down, and some increased? I know higher dose of LDN may help but can’t seem to get there.
Thank you.
Hello Marianna
Interested to read 3 months on, how you've got on with LDN but Im afraid Im at a loss as to what best to do. I had to give up totally on it as even the tiniest dose upset me after a few days. Same thing as happened when I tried to take tiny doses of T3 - angry, irritable. The only really successful thing I have done is give up gluten a year ago. that has made a staggering difference most of the time although I still get stomach issues whch combine with anxiety and make me feel dreadful. So I think I must still be eating something which isn't too good. Like you, my iron etc. wasn't where it should have been and Ive been on Levo for 15 years now. Since giving uup gluten I have had to reduce my Levo (good) from 88/day to 50/day. My anti bodies have come down slowly over the year and im about to test again.
Let me know how you are getting on - as this is an old thread you can always PM me and we can either chat that way, or swap email addresses. I would love to know how to move forward with LDN, I dn't want to give up for ever!
Best wishes
Andrea
Andrea,
I continue to experiment with LDN, slowly though.
I have been taking it every other day, or even every 2 days if necessary sometimes. So far I was able to raise up to.75mg, taking it every other morning with .05mg increases evey2 weeks, if I try to take it daily, in 2 days I feel flulike symptoms and fatigue, the same if I increase weekly, so low and slow is what I’ve been doing. When I tried to take .80mg I felt flulike symptoms and headache as well, went back to .75 and that felt better. Looks like I need to stay on .75mg for a while and maybe increase by .025 mg...since I have MTHFR, I don’t detox well, although I support the liver, it’s probably not enough, when I try to do more, it backfires bringing on fatigue and flulike symptoms. I get discouraged and upset and very anxious that I can’t get better, but then I’m at it again, trying to improve. My diet is 90% AIP, I do get occasional bred slice or some nuts, but very very few and far in between.
I have done testing on my thyroid, have hashi, also MTHFR, very sensitive to meds, drugs and supplements, as well as herbs, that’s why diet is crucial in my case.
I was reading posts above re testing hypothalamus and pituitary but didn’t know if that’s necessary in my case. Could you please explain why you have had these tests?
Thank you and best of health.
Mariana
I know this is an old thread but wanted to share my experience. I started LDN over a year ago and kept it up because I had read that some don't get relief for months and a few have to take it for up to a year.
I was taking it for about 8 months and realized that I didn't have pain and issues that I had grown accustomed to having. I read that it must be prepared without calcium as a filler and it has to be taken just before bed, not within 2 hours of food because it must be a fast release. I took 3mg every morning for two weeks so that I could become acclimated to it without it disturbing my sleep and giving me horrible nightmares. after the two weeks I started taking it just before bedtime without any sleep disruptions. If it is not taken at bedtime, it won't work properly.
Stick with it and make sure it's prepared properly. Most do well with 3 - 5 mg. I started at 1.5mg and am now at 3.5. Fight through the initial side effects and give it TIME.
thank you so much. I recently tried again but think I raised too fast, and had to stop again. Now I have problems with stomach (poss ulcer) but once that's sorted I will certainly have another go.
this time I did try it at night and I have to say, I slept really well, AFter I had raised to 1.0 from 0.5, second day got dreaful anxiety (which I blamed LDN for) but now wondering if it was the ulcer trouble.
Hope you continue well, we need LDn to work as there's nothing else, Do you get yours from Clinic 152 in Glasgow ? In liquid format ?
Andrea
The LDN gave me anxiety too, it's an unfortunate side effect but passes after a while. I am in the States and couldn't find a doc to prescribe it for me. I just got mine through alternative means and prepare it myself. Mine are in tablet form that I crush into a powder and put it in capsules. I can't imagine a liquid as it tastes horrible!
I did extensive research and sought info from others who had taken it for a while. I just wanted to encourage others to not stop and push through the initial difficulties/effects and give it up to a year before giving up.
I also adhere to a very healthy diet, mostly AIP, but heavy on the green veggies, healthy fats and protein.
Check out L- glutamine for your stomach, it's great for that.
Keep up the good work!
MB
Thanks again for info and also mention of l glutamine which will check out . Just wondering, do you have a thyroid issue as well? I think for me the thyroid complicates many of the things i try
When you say give it time with the side effects, did you also experience irritability that passed? It's the only side effect I have after 4 days on 1,5 other than that it improves everything for me so far, but it makes me furious so I'm really hoping it's temporary
Hi Sheron,
I’ve read your very informative reply to Naturegirl re methylation. Sine I’m a newbie to LDN, your information raise a lot of questions for me. I’ve been prescribed LDN for Hashimotos, Being very sensitive to meds, supplements and herbs I was reluctant to try, but felt that I owe it to myself if I want to get better. I’ve been given .05 liquid to start and increase weekly by .01 to be taken before bedtime
I felt very lithargic almost all day next day and then took .05 before bed and again the following day could barely keep myself awake, tired, slept better overall I must say.
So I began taking LDN earlier in the day, like 6pm, or 5 pm and felt the same, I felt more energy as I took it and then very slow the following day, so I switched to taking it in the AM, still very small dose .06 mg and that worked better, but after 3 days, more energy but having hot flashes, headaches, I stated getting anxious, achy, and depressed
like I’m getting a flare, I skipped a day and felt I’m better taking even smaller doses, like .025 increasing by .01, but not sure yet, only been a week. I feel LDN gives me a headache the day I take it?
Was wondering what that may be, and after reading your post feel maybe I’m under methylating, I do have MTHFR and c677f mutation.
How do I find out re hypothalamus pituitary function? Thinking there could be something there because I have adrenal fatigue, my cortisole is low in the morning based on saliva testing, maybe something to do with a signal not reachymy endocrine system?
Could you guide me to the sites re methylation
Thank you very much.
Mariana
Hi Mariana - same here - LDN seems to make me more anxious and not really helping with my depression (+ waking up really early in the AM so more tired - taking 8AM 1.5 - 2 mg )
Thank you for chiming in on the methylation variable and LDN. What is the best in your opinion to test out.
In my case - taking LDN for... depression (as regular SSRI - serotonie reuptake) make me gain wait, low sex drive + esp. less positive moods...
Yet LDN (1.5 2 mg since last Dec.) does not seem to help much... I am feeling quite desensitized and feeling more anxiety bouts.
I had to dial down the dosage from 3 mg because I just could not sleep. I was told to take in the AM. (Now someone else said she splits her dosage between early AM and just before going to bed.
Any recommendation? Even at 2 mg taken at 8 am I will wake up at 5 or 530 am... So caught between rock and hard place... Not sleeping not helping with depression yet low dosage not helping either...
Hello! I’m also on an a Alzheimer’s medication for my fibromyalgia and I swear up and down it doesn’t help me AT ALL…NOT EVEN THE BRAIN FOG, same as you! My pain management clinic doctors are now considering putting me on LDN AND MEDICAL MARIJUANA TO HELP WITH THE FIBROMYALGIA, CHRONIC PAIN DISORDER, and PERMANENT SEVERE NEUROPATHY! I’m the type to ALWAYS research any medication I put in my body so I’m hoping to get some insight on this med as well. Antidepressants mess with me, mood stabilizers don’t help(bipolar and GAD). I’m desperate to find something that will give me a quality of life back!
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
there is a compounding pharmacy in Windhoek now. It is called NOVECY and is near the mediclinic in Eros Park. They are very helpful.
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
LDN is likely not causing your emotional distress... the endorphins allow your emotions to speak up loud and clear... AS a therapist who has worked with many clients using LDN, this emotional shift is common, and is often what allows people to do the deep healing work.
The increased endorphins cause us to be more 'embodied', which also means we become more aware of our feelings... emotions reside in the body. For some, this awakening of their emotions/anger feels unwelcome... However anger is an critical emotion--that can keep us safe and protect us. LDN treatment often allows people to 'heal their relationship to their emotions'...
When emotions overwhelm our resources, they are usually traumatic emotions. If the emotions feel too strong (overwhelming), you may want to learn how to use "EFT tapping' which is an easily learned technique for reducing emotional distress. IF you google it, you will get a million hits, and there are plenty of online videos that can teach you how to do it.
Anyone who is healing from a chronic illness deserves support on a regular basis. I recommend that people have a 'health partner-- which could be a therapist, or an acupuncturist, or a physician/ naturopath.
Thanks so much for your advice. Glad you have had success with your clients. Are you in the UK ? I am about to embark on LDN again (just awaiting my order) so its just come at the right time. However I can't find any experienced practitioners in East of England, so Im 'on my own'
I am very interested in tapping too having heard bits and pieces about it, so will give that a try too
best wishes
Andrea
You may be addicted to something and are experiencing withdrawal. Goes away after a few days unless you are still using. Probably alcohol as most people know LDN doesn't work with opiates.
Daffers, sorry to hear about the anger. My pharmacist told me to take it at night about 9 ish. I bet that would help!
Dear Friends,
Your communication, input and advice on LDN are all truly helpful. I have been extremely sensitive, irritable, angry and intolerable to almost everything: people, sound, lights, touch, smell, while on LDN 4.5mg for 9 months. (I was prescribed LDN for Reflex Sympathetic Dystrophy, RSD). We read LDN takes time to work, and may cause insomnia, so I have been taking it in the morning.
Since I decided to stop LDN for the last 3 weeks, I seem to be at ease, calm, tolerable to thing, and happy.
From your input, I will begin to take LDN at night, since my RSD is starting to give me pain and bother me ).
Thank you!
Ultra LDN and Oxycodone together
Help with LDN and major depression, anxiety, fear of leaving house, and constant feeling of dread
LDN Community - does anyone read these posts or just put fancy videos up?
Symptom improvement hampered by emotional apathy
Ldn restores life
