I’ve just had my TSH checked for the first time since starting LDN 3 weeks ago and it’s risen from 2.2 to 4.4! I thought LDN was meant to lower TSH, not increase it. Has this happened to anyone? I don’t want to stop it because 4.4 is not even that high and this might be temporary, but does this happen in some people? Thanks so much!
I’m currently at 4.5mg of LDN after titrating up since February.
I’ve noticed that I’ve been getting random waves of nausea throughout the day. I take LDN at night, and feel fine after taking it. The nausea starts the next day, usually in the afternoon and evening, and seems to happen randomly — I’ll just have this sudden feeling like I’m going to vomit and it will pass in a few minutes.
Has anyone experienced this?
So I have a neurological condition called NDPH (new daily persistent headache) which means I have a migraine 24/7 constant the same one from when it all started in November.
I’m also extremely reactive to meds and being tested for MCAS currently as I respond really badly to a lot of drugs.
I was put on LDN as a lot of drugs either haven’t worked or I’ve had really intense reactions- from fainting to hospitalizations to convulsions.
I was excited when reading about it and knew ahead of time there’d be side effects like all drugs. I have a pretty high tolerance for side effects and really fight hard to trial drugs as long as possible.
She started me on 1.5mg at a compound pharmacy- she didn’t want to do lower, I’ve asked twice. But taking it has really really really messed with me- I feel so incredibly sick, faint, my BP is incredibly low and my heart rate is high. I almost fainted at my doctors office- I’ve cardiology and had scans done priorly and I’m 100% fine and have no prior blood pressure or heart rate issues or family heart issues.
I feel so sick and dizzy and terrible- to the point I’m struggling eating, functioning. I feel so wrong. When I skip doses I feel better after about 24 hours. I constantly feel like when I take it that I’ll faint and almost did today during my blood draw.
I’ve told my neuro it’s helping my head but it’s so so terrible for the rest of my body. I’m already massively underweight and in threat of possible feeding tubes and I’m already pretty unfunctionable so feeling this bad feels impossible.
She doesn’t want to drop me doses and it’s a capsule like compounded capsule and ik I’ve read on here it could be the filler in it or the dose is too high- and I’m trying to figure out can you dilute a capsule?
Is it even worth me continuing to try? My neuro really really wants me on this and to try it for a month and I’m trying so hard but this feels so terrible and I do not want to end up back in the er for fainting or drug intolerance. I just don’t have the money for that or the veins for another IV with how many blood draws and hospitalizations I’ve had.
I've trialed LDN 3 times. The first time I started on 1.5mg, the second time I lowered the dose to 1 mg, and the third time I lowered the dose again to 0.5 mg. Each time I've taken this medicine I experience extreme fatigue and a sore throat, it feels like I have the flu. The fatigue and sore throat are less intense on the 0.5 dose, but still there. I'm on Vyvanse for ADHD, and the LDN causes so much fatigue, it renders the Vyvanse useless. Did anyone else experience these side effects when first starting? Did it ever get better? And if so, how long did it take for the side effects to lessen?
I’m hoping someone can help me make sense of this because I’m really confused and have no idea where to go from here. The doctor who prescribed the medication to me has no idea either, nor does the pharmacist I spoke with.
I’m taking LDN for long covid brain fog and fatigue, and MCAS-like symptoms. I also have a bunch of other issues like endometriosis, POTS, etc.
My titration history:
- Started at 0.5 mg at night and tolerated it well for about 2–3 weeks. I increased to 1mg and that flared up my MCAS-like symptoms and impacted sleep, so I came back down to 0.5mg and was told to increase by 0.1mg per week because I felt worse every day for a week.
- Increased gradually by 0.1 mg weekly
- Did fine at 0.6, 0.7, 0.8, 0.9mg
- Eventually titrated up to 1.1–1.2 mg, possibly a bit too quickly, which is where my problems started.
That’s when I started getting horrible sleep maintenance insomnia. I’d fall asleep quickly, sleep deeply for the first part of the night, then wake up 4-5 hours later, around 3–4am, and feel wired but tired, activated, hot, restless, somewhat short of breath and unable to get comfortable. Nothing would help me get back to sleep - not melatonin, Benadryl, glycine, magnesium glycinate, etc. I’d only fall back asleep around 6:30-7am for up to an hour and would make it through the day fine for the most part.
Before 1.1–1.2mg, I had zero issue sleeping on lower doses, including 0.5mg. Once the insomnia started and seemed to not be going away, I tried lowering again and things have been weird ever since.
I tried switching to morning dosing at one point and my sleep was still impacted 20 hours after taking it. I also felt kind of unnaturally wired during the days even though my symptoms seemed better managed.
I then switched back to night dosing and went down to 0.7 mg, which was somewhat better (sleep still very fragmented but somewhat less prolonged 4am wakefulness). I still felt kind of weirdly buzzy during the day. I then dropped to 0.5 mg again (which I previously tolerated for weeks at the beginning with no issues sleeping), and now it’s almost like my insomnia is even worse.
What’s confusing is:
During the day on 0.5mg, I actually feel decent. I have less brain fog, better exercise tolerance, improved MCAS-like symptoms, less daytime “wired” feeling than I had on higher doses… So this suggests 0.5 might be a better dose, but nights are still unstable even though they hadn’t been before.
Has anyone experience becoming more sensitive even to lower doses that used to be fine? Could going too high (1.1–1.2) temporarily destabilize things so that previously tolerated doses don’t feel as tolerable until the system settles? Does this sound like 0.5mg is still too high and I should reduce further?
I’m trying to figure out whether I should hold 0.5mg steady for a couple weeks and let things stabilize OR reduce lower OR if this pattern means something else entirely and I may need to increase again?
Would really appreciate hearing from anyone who’s experienced something similar.
Hi,
Forgive me - I’m really worn out from both a recent layoff notice and seeing a new rheumatologist today.
He seems like a very knowledgeable guy, does a lot of clinical trials and teaching, and gets amazing reviews as a kind and compassionate doctor.
He did some kind of test on my nervous system - all I took away is that my baevsky index is 1550, and he said it should be 50-100, or 150 on the upper end. 😳 so apparently my nervous system is a chihuahua on redbull. He said its a strong predictor for people who won’t respond well to biologic meds (i have spondyloarthritis).
Anyway, he mentioned benzos (but didnt want to prescribe them, and I dont really wanna take them) and very specific breathing techniques and CBD to calm down my nervous system and bring this index down.
He didn’t mention LDN, but I’ve known a little bit about it for a couple years and I am extremely curious and think it could be ridiculously helpful for me (i hope!)
I know many rheumatologists will prescribe it. Does yours? What was the conversation like - did they suggest it, or you ask about it? Did they know much about dosing, particularly microdosing?
Just wanting to hear peoples experiences.
I still feel a bit overwhelmed from today. It felt like a screaming wake-up call when he said my level was “VERY bad”. I thought I already knew how sick I was, but idk this feels like a whole new level of my body saying “hello, things are not going well”
I'm hearing that Google is at war with various things related to LDN (reasons unknown except for pressure from big pharma). As my key information is in the form of Google docs if they go after that it will be the end of my helping people with them. I need someone to backup all my Google docs as Word docs. This may require some work in terms of formatting. but should be rewarding for anyone wanting to learn about LDN. It will be a substantial project and take some time. Please DM me if you may be able to do this.
Started 1.5mg two weeks ago. Originally took it in the morning but moved to late afternoon. I'm so tried. I can barely make it through the day. I've read that will end, but when? Anyone have experience with this?
I know there’s previously been information on thrush here - thank you admin. I felt a bit overwhelmed though so am starting a fresh post. I‘m relatively new to POTS/MCAS after being triggered by a covid like virus a few months ago. I’ve always been prone to vaginal thrush (46y female) but kept it in check somehow. Now I’m in compression tights, with a restricted diet of no fermented products thanks to MCAs, it felt like a losing battle. I’ve just felt my first symptoms of thrush after a week on 0.5ml of LDN. Am I okay to use thrush pessary clotrimazole? or should I temporarily halt the LDN until it clears? Additionally I’ve had a very dry mouth and white tongue but I’m not totally convinced it‘s oral thrush, although I am paranoid about the connections with LDN. Thank you.
Hi, looking for a bit of advice. I started LDN on 28th April this year. I have M.E., POTS, and probably MCAS as well, although trying to get that diagnosed on the NHS feels pretty pointless at this stage.
I started on 0.5mg for the first two weeks and initially had a massive increase in fatigue and pain. After about 7 days it settled down a bit, and then I actually had probably the two best days I’ve had in the last 6 months. Because of that, I increased to 1.0mg as per the titration instructions (0.5mg every 2 weeks up to 4.5mg).
Ever since increasing though, I’ve had a big flare in both fatigue and pain again. I’ve tried taking it both in the evening and in the morning, but it doesn’t seem to make any difference. I’m waking up with aches and pains that feel 10x worse than normal, sore throats, and generally feeling awful. I’m also taking paracetamol virtually every day at the moment just to cope with it.
I think I probably went into LDN hoping it would be a bit of a magic bullet like it seems to be for some people, but at this point I genuinely can’t tell whether it’s helping or making things worse.
Has anyone else experienced this when increasing doses, and did it settle with time? It’s also possible that this is just my M.E worsening, although, I’ve not done much else across the last week or so apart from lay on the sofa.
I've been on LDN for about 11 months. It took a while, but I have noticed a big improvement in multiple areas. Wondering if I could improve even further, I asked to titrate up. I was prescribed an additional rx of .5mg pills (on top of my usual dose). I went up .5 for 6 weeks, then increased an additional .5 (1mg total) for about 2 weeks, and am dealing with more side effects than I did at my previous dose. I'm willing to keep sticking it out (I think 6 weeks would be sufficient), but I'm going to run out of .5mg pills before then. I could get another 90-day refill, but I paid the same amount at the pharmacy for the 90 days of .5mg as I did for my full dose. I can't keep paying double! I'm tempted to just go back to my previous dose, but I don't want this suffering to have been for nothing. Thoughts? I'm not sure if this person will prescribe the 50mg pills for dissolving in distilled water - I will find out. But I also read that may not be the best option.
I guess I'm asking if any of you had bad side effects for over two weeks that then subsided? If so, how long did it take? And did you feel noticeably better at the new dose? Have you found an affordable way to titrate your dosage?
Background info: was initially prescribed for fibro. Has improved my sleep, fatigue, pain, bowels, endometriosis. Started at 1.5mg, titrated to 3mg, and had been at that dose since last October. After some time, I realized how much better I felt. I didn't notice much change after 6 weeks at 3.5mg. Moving to 4mg caused awful fatigue, low mood/motivation - I felt super depressed for about 12 days. Less than a week in, I got really bad constipation. The fatigue/depression is lifting a bit, but the bowel situation is getting worse. Overall, this has been a downgrade so far!
Hello! I started LDN last Tuesday (today would be day 6). I am on 1mg of the liquid suspension. It tastes so bad. It’s like cherry cough syrup. It makes me so nauseous. I called the pharmacy and the pharmacist said that it shouldn’t taste like anything. She said no one had ever complained about the flavor before. She made me feel bad for complaining but the medicine tastes super bad. I asked if maybe it was the wrong medicine since she said it shouldn’t taste like anything, she got very upset and continued to tell me no one has ever complained and that she did not make a mistake. I’ve also been having weird symptoms since starting it. Flu-like symptoms such as a low grade fever, swollen lymph nodes, more muscle pain. I also cannot sleep well (which my doctor said was normal). I really want to give this medication a try but the taste is so bad and the symptoms are killing me. Does anyone else struggle with the taste? Or find it has an artificial cherry flavor?
Has anyone gotten pregnant while being on LDN?
Hi! I’m going to talk to my rheumatologist tomorrow and going to ask if he will prescribe me LDN for my psoriatic arthritis and other autoimmune issues
I’m very curious to know from people who take LDN:
My functional medicine doctor told me to get my primary care doctor to prescribe LDN for me. I am currently on 1.5mg of it.
I was told to take it for my SIBO/Possible autoimmune disease/Possible mold toxicity/Possible Lyme disease.
My primary care doctor wants to know how long I'm going to be on it so I asked my functional medicine doctor 3 times and haven't gotten a response.
Symptoms I would love to see subside are: lower body aches and pains. My feet hurt the absolute worst. I wake up every day and they feel like I've run a marathon the day before. My knees, hips, and thighs also ache. It's been like this every day for the past 6 months. I started with the functional medicine doctor in March and haven't felt any improvement in the pain.
Questions:
How long do people typically take it? Is it a lifetime thing or is it a period of time and you feel better and then stop taking it? I am worried that my functional medicine doctor is getting me to take it so my pain goes away and I feel better and they can say "I healed you!" and justify their astronomically high prices but not actually cure me.
I was reading about it impairing driving. What things do you notice while taking it that inform you you're driving is impaired? I also ride motorcycles. Should I avoid that while I am taking it?
I've had brain fog for months now and I read this could cause brain fog as well. How soon would you be able to tell you have brain fog? How can you tell it's causing it?
How do you know when to switch from taking it at night to taking it in the morning? I'm currently taking it at night and it's been 3 days (I stopped for 5 days because my functional doctor didn't respond to my questions for 5 days about whether or not I should be taking it). I don't seem to have any issues with nighttime dosage yet but I was curious as to how long people take it before they notice issues.
I started LDN 5 months ago and have been titrating up very slowly as I seem to be sensitive to negative side effects. I just reached 3 mg. I was hoping to find relief with a multitude of things- POTS, chronic pain related to hEDS, PTSD and other mental health reasons etc. it seems that most people saw relief for these things a lot sooner and at lower doses. Should I not give up completely?
My doctor prescribed me LDN 2 months ago and I’ve been afraid to start it after reading all of the posts on this subreddit! He prescribed it for SIBO/motility/gut inflammation, and after I researched it more I was hoping it could also help my untreated ADHD, depression, and anxiety. My gut is really a mess and has been for a while so even though I try to stay away from meds I’m down to try it especially since it’s more of a “functional” medicine.. He’s starting me at 1.5mg, as that is the lowest dose the pharmacy fills. He said it was extremely safe and helpful for his most sensitive patients, and the only side effects could be vivid dreams. The pharmacist who filled it and consulted with me was really nice and she said the same thing. However after reading here on reddit it seems like this dose is too high? I have extreme medication anxiety, along with being really sensitive to foods and meds and supplements, just on top of being super anxious and paranoid, I also have a history of panic disorder. I’m not on any mental health meds as the couple I’ve tried I reacted terribly to. I live alone and am just so scared to take this LDN pill at night before bed all alone, especially after reading these stories on here.. I already filled and paid the $80 for the month’s worth… what should I do? Do I suck it up and be brave? Or should I push through without it?
Weird because I also have pep and energy, but feel like if I sat down and closed my eyes, I’d be in a deep sleep for a few hours.
I was on 1 mg for three weeks and now 2 mg the past three weeks. I feel better. Not hugely better, but better.
Is six weeks past the point of usual initial fatigue?
I wanted to share my story about using LDN to improve my small fiber neuropathy symptoms now that I have given it a fair shot being on it for 8 months.
Before starting LDN I was extremely depressed dealing with chronic nerve pain literally 24/7. For those that have not had the pleasure of living with nerve damage, for some of us it feels like hornets attacking you almost every waking moment. Needless to say, that caused mental distress and I was desperate. I saw one post here about someone else with neuropathy who saw improvements from LDN so I gave it a shot.
For me, it has been a gradual improvement and there were a handful of times I wanted to give it up, but 8 months later I am grateful I stuck it out. I am mostly pain free. My burning pains that plagued my legs are completely gone. I had deep nerve pain in my left pinky tow and left pectoral muscle non-stop which have both completely disappeared. I had nonstop pins and needles in my pelvic floor and that is gone too. The only symptom that remains is the stabbing pains and that has greatly reduced in frequency. Taking LDN has allowed me mental clarity and time to realize that my diet also plays a big factor in my flare ups and I've cut out gluten and tomatoes after identifying them as triggers.
I have ordered about 2 years worth of LDN just in case tariffs get wild as I don't see myself getting off of this medication until there's better options. Oh! I also do get the vivid dreams which for me does really suck cause I struggle with PTSD soooo it amplifies those...but I am much happier during the day so I continue taking it.
For anyone hesitant about starting LDN, it works for a lot of people, not everyone, but you never know until you give it a shot? Hope y'all find something that works for whatever you are dealing with ❤️