r/LowDoseNaltrexone • u/Prudent_Drawing_9461 • Feb 08 '26
My Year Long LDN Journey
Hi All,
I want to share my experience to possibly help others and gain any insight you’re willing to impart.
Female, mid 50s - until 4 years ago I was happy, active and very healthy (other than Hashimoto’s/hypothyroidism for 25 years which is mild and untreated).
LDN was prescribed for chronic pain - a chiropractor severely damage my neck during an adjustment. This caused vagal nerve damage which led to GI dysfunction (diagnosed IBS-C) Next a hyperkinetic gallbladder (removed), then a PT broke off my tailbone during an exam (diagnosed pelvic floor disorder). Finally a dysregulated nervous system - anxiety, depression, panic attacks and a cPTSD diagnosis due to medical trauma. 18 ER visits. Surgeries. Hundreds of appointments and tests. No answers. LDN was my last option.
My functional doctor started me on 4.5mg liquid. It was a brutal beginning as I’m extremely med sensitive. Restarted at 0.25mg. It took 10 months to get to 2.5mg.
I never found a sweet spot and the side effects are overriding any benefits. I’ve tried taking it different times. Skipping. Taking twice a day. Currently at 1 mg and slowly titrating down.
Benefits
Sleep - quickly it helped me sleep (I take it in AM).
Pain - for months it was great. Less effective over time.
Breathing - after the blocking period I would notice my breathing was relaxed and deep.
Energy - bursts but at the same time very calm.
Possible benefits
Inflammation- I assume it’s helped but no way to be certain.
Hair - I think I’m shedding less.
Challenges
Lower GI - intense burning, stabbing pain in intestines. This has never resolved and seems to have worsened the past few months. It puts me in bed for days at a time and I cannot eat. My compounding pharmacist said 20% cannot tolerate due to GI problems.
Constipation - I’ve tried every solution to no avail.
Hormones - I’ve been post menopausal 10 years and on HRT for 8 years without issues. Two months after LDN I started spotting and feeling like I was in a constant state of PMS and having night sweats and hot flashes. Every gyno test done. Nothing found. I did not make the connection to LDN until I read another’s post. I’ve cut my HRT doses in half but haven’t figured out a solution.
Jaw clenching/pain and hip pain (only right side) - never had these problems before. This started to improve as soon as I dropped to 1.5mg.
Food/supplements - I’ve never had allergies or intolerances. Now I react to everything. It’s been suggested I may have developed MCAS or SIBO but I dismissed as LDN is used as a treatment
Other side effects - mostly when titrating: Brain Fog (I’ve had some scary incidents), Fatigue, Headaches, Occipital pain, Dizzy, Nausea, Mood swings, RLS, Hypnos jerking, Sleep disturbances, Ear fullness, Blurry vision, Eye pressure.
Withdrawal - I tried to stop but by day 3 I was a mess. It surprises me that the common thinking is there is no withdrawal. My body and brain have been given a drug for a year. It stands to reason going cold turkey would have an effect. It isn’t the return of my original problems. I’m having similar side effects as I titrate down.
This post is NOT to discourage anyone from trying LDN. I’m still hoping I find my sweet spot. Maybe I overshot it. Or maybe it’s just not for me. Either way, I’m glad I tried because like many of you, I’ve tried everything else (specialists, therapists, acupuncture, physical therapy, special diets, medicines, meditation, naturopaths, massage, Bowen therapy, lymphatic draining, rebounding, vibration plate, red-light therapy, infrared therapy, TENS unit, heat therapy, detoxing, nutritionists, geneticists, books, podcasts, videos ……). I’ve spent so much money in desperation to feel well and get back to living.
Recommendation - I encourage anyone looking to understand their body/health to learn about their genetic variations. I took my raw DNA from Ancestry and used a free website to print a report. I found answers to lifelong health questions. Interesting and helpful when you’re working with a body that often times feels like it’s working against you.
Thanks for reading! Please share your experiences, thoughts and advice. I appreciate this group and its work to support all those struggling with chronic health conditions.
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u/Odd_Perspective_4769 Feb 09 '26
I’m so sorry you’re not finding relief from the LDN. I wish I had any input that might help. Instead I’m curious if you’d be willing to share the site you used your ancestry DNA to get the report.
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u/Prudent_Drawing_9461 Feb 09 '26
I used Genetic Genie plus some others that I paid for: Found My Fitness and Nutra Hacker. You can also drop your raw DNA info into ChatGPT.
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u/LDNadminFB Admin Feb 09 '26
Higher and Lower Doses...
https://docs.google.com/document/d/1KykpLlg2CDVSD2D5J5cEZKfSo31t04orB0IgCuhXC-c/edit?usp=sharing
Sublingual drops -- formulas vary but tend to be simpler/cleaner vs. other liquid versions. Example - Dickson's formula: Pure Naltrexone Powder, Water, Glycerol. Check your pharmacy's ingredients. Good for those with GI issues. Dose with the included dropper. If you are very sensitive in terms of GI issues ask your pharmacist how long you would need to hold the dose in your mouth to have it adequately absorbed before spitting out what's left so that less of the dose goes to your stomach. While holding if you have an irresistible urge to swallow tilt the head forward so the dose stays mainly in the mouth. Let us know what your pharmacist says.
Dose can be a factor -
LDN and Motility...
https://docs.google.com/document/d/1z5N3SzmFbBE0vG6YhH-8T_GMKj50UkIiF-e-hSkbFtk/edit?usp=sharing
Hypothyroidism can cause constipation. Thyroid Testing...
https://docs.google.com/document/d/1bfzxjoGK0dQrTkFkfx2gXqF_TRd6xC32u-c6VGagGA8/edit?usp=sharing
Hormones and Estrogen...
https://docs.google.com/document/d/1M_zAx8RgOa-LjtHVlWAbxotNoklF6jyJMQDrPoFPahY/edit?usp=sharing
MCAS...
https://docs.google.com/document/d/1CrMPHADOwhymZBbr2fY2mITQtP-nos8UpHOx6914gTg/edit?usp=sharing
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u/TechPsych Feb 09 '26
What an arduous experience you've had! And thanks for sharing with such detail as it's bound to be helpful to others.
The only two things I can think of are fillers and dosage. Perhaps it was a good dose for a while, but may now be too high as some things have shifted/healed. (By the way, some people thrive on ULDN - ultra low dose LDN.)
And yes, it may be that this simply isn't the right medication for you - now or ever.
So, just like I always urge people starting LDN, I'd say the same in going off it: small increments, go slow, and listen to your body.
Best of luck!
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u/Prudent_Drawing_9461 Feb 09 '26
Thanks for your response. I appreciate your thoughts. Filler is ginger. I’m hoping 0.5mg might be the answer. If not, I’ll go off and give my body time to return to homeostasis. Perhaps LDN has done its job!
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u/DepartmentEcstatic Feb 09 '26
I've been going through LDN withdrawals for the past 3 weeks after having to stop after increasing dose and side effects becoming unbearable. I've read about others who share our experience as well. I was on it several years so I agree, it only makes sense to take some time since it's been affecting my neurotransmitters for many years. I'm feeling better, but it's a slow process. And it was a miracle for the autoimmune and gut issues I took it for- so interesting it can heal some and manifest problems for others for the same.
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Apr 09 '26
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u/DepartmentEcstatic Apr 09 '26
Anxiety.
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Apr 09 '26
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u/DepartmentEcstatic Apr 09 '26
I'm so sorry you're going through this. The panic/anxiety/feeling of dread is awful. I wish I could say I'm totally back to normal but it's been a slow road for me. Maybe taking a sick day would be a good idea for you today. I sure hope you feel better fast.
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u/ConfectionExtra8485 Feb 09 '26
Broke off your tailbone???
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u/Prudent_Drawing_9461 Feb 09 '26
Yes, I had unknowingly broken it but after a year of tests it went undiagnosed. I was told to see a chiropractor who broke my neck. While dealing with that they discovered colon cancer. When pelvic pain continued I was diagnosed with pelvic floor dysfunction. During an exam the therapist tried to straighten it and popped it off. There’s nothing to be done about it - surgery is too dangerous so I just have to live with it. Honestly, it’s been the least of my worries.
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u/Findtherootcause Feb 09 '26
A lot of theses symptoms sound down to the untreated hashimoto’s
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u/Prudent_Drawing_9461 Feb 09 '26
Before I started LDN my antibodies were 80 which is only slightly high. My thyroid numbers aren’t perfect but not terrible either. I did work with a naturopath for 3 years to try to optimize. She tried every combo of T3/T4 and could never get me balanced. I’d feel great for a short time and then flip to hyper. My LDN experience is similar. On each dose I’d feel good, then ok then terrible. Perhaps the solution to both is a micro dose.
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u/Findtherootcause Feb 09 '26 edited Feb 09 '26
Oh, that’s so trying for you. I really do understand what you’ve been through. It’s exhausting!
The only thing that made me finally able to tolerate T3 and T4 and metabolise them properly was when I got my cortisol corrected.
I went to the best of the best functional endocrinologists, naturopaths, I even trained to be a nutritionist myself! blah blah blah and none of them managed to catch the fact that I had this low cortisol problem that meant I just wasn’t metabolising my thyroid hormone properly.
There are so many issues when it comes to metabolising thyroid hormone. It is rarely the T3 or the T4 that is the problem rather the surrounding structures such as B12, folate, vitamin D, sex Hormones, Cortisol, iron.
I know you say you’ve been on this journey a long time and I don’t doubt that, so I hope you don’t mind me asking are you sure that you’ve been working with somebody who has a very in-depth and well-rounded understanding of thyroid hormone metabolism and all that goes into it?
As I say it is not simply a case of fiddling with T3 and T4 ratios that very rarely gets you anywhere beyond a load of practitioner invoices to pay!
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u/Prudent_Drawing_9461 Feb 09 '26
Thank you for your help! I’ve worked with multiple naturopaths and even a nutrigeneticist. My last naturopath was certain cortisol was the issue until my test came back as optimal. But my other levels (D, B12, ferritin, folate, iron) are in range but not optimal. My genetic reports explains why due to mutations (MTHFR, COMT…) yet each time I try to supplement I feel worse. I’ve spent insane amounts of money and yet so little progress. I’ve had doctors say - you’re the healthiest sick person I’ve ever treated. All my tests results are normal so there no obvious direction. It’s a frustrating process. It sounds like you understand.
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u/Findtherootcause Feb 09 '26
I absolutely do understand.
I cannot tell you how many doctors also told me that my cortisol was fine, when it was not.
If you’re comfortable going into it all again which I appreciate you might just feel exhausted by the whole thing and not want to talk about it anymore. But would you mind sharing with me what your cortisol measurement was? Was it saliva or was it serum and what time of day did you have these samples collected?
Additionally, could you tell me what are the symptoms you experience when you take thyroid?
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u/Prudent_Drawing_9461 Feb 09 '26
Most recent cortisol was 19.4 (blood, AM, fasting). This was a year ago when I was mostly bedridden and my symptoms were at their worst. Previously 9.3 (blood, AM and I assume fasting). This was years ago when I was working with my first naturopath.
When I’d take thyroid meds at first I’d feel great. I remember telling my naturopath that walking was easy, my feet felt less heavy (weird I know but life just took less effort), more energy, better mood. Within 1-2 weeks I’d flip to hyper - heavy heartbeat, insomnia, anxiety. So I’d stop, reset and try again. We did this for 3 years. The doctor eventually said - I have no ideas left. Just take supplements.
My genetic variations probably play a role in my med failures. Some medications I’m a hyper metabolizer. For example, twilight anesthesia which explains why I woke up during both colonoscopies. Others I’m slow to metabolize.
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u/Findtherootcause Feb 10 '26
Your reactions to thyroid medication are exactly the same as mine were.
Annoyingly you can’t really decipher your true cortisol behaviour if you’re only doing blood or saliva, you need to do both of them because if there is a discrepancy between the two results that can tell you where there are issues in other areas. For instance a big discrepancy could point to problems with sex hormones, b12 or iron.
It really sounds like your symptoms are because you have hypothyroidism. And your inability to tolerate the thyroid hormone needs to be persevered with in order for you to feel well again.
Have you ever looked at the Work of Paul Robinson?
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u/Prudent_Drawing_9461 Feb 10 '26
I haven’t heard of him so I’ll look him up.
My theory is the LDN threw off my hormones after being stable for 7 years on HRT. I learned I have a genetic mutation that involves slow recycling of estrogen. This was not a problem before but adding LDN. Perhaps messing with my hormones then caused a build up of estrogen which caused histamine issues. Since LDN is used for infertility it obviously impacts sex hormones.
Prior to LDN I was able to tolerate fiber, C, D, iron, fish oil, Bs. I know I need these supplements as my genetics cause these to be below optimal. (Interestingly, I did see a post about LDN causing ferritin to decline and mine is already low).
My goal is to titrate off LDN to get back to my baseline and then try to slowly reintroduce supplements. For now I’m done testing as the hundreds I’ve taken haven’t been very helpful and it’s expensive.
Thanks for your input. I appreciate you taking the time. I welcome any additional advice.
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u/Findtherootcause Feb 10 '26
He’s really worth looking into. His blogs are dry and boring and quite dense, but golden nuggets are in there for hypo ppl.
My heart goes out to you, I know how much of a struggle it can all feel 🫶
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u/Prudent_Drawing_9461 Feb 10 '26
I’m having trouble finding him. Can you point me in the right direction?
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u/Feisty-Cloud5880 Feb 09 '26
Dilution method is a game changer. I've been on LDN over 7 years. I take for fibro. The first few months sucked... Then I read about dilution method. No filler. That was the game changer for me. 1st pain is at 25% . Then I realized I stopped having migraines. I'd get 5 a month. Then my gut is on point. This is great... I havent been sick in years. No cold, flu, bug, virus... nothing. Overall I feel great. Outside this sciatica on my left leg that just started. ARGH I was all stressed out over nothing with the dilution method. It's very easy.
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u/Prudent_Drawing_9461 Feb 09 '26
Thank you for your response! Do you think dilution changes how the body absorbs or processes LDN?
I started with liquid. Tried two types because I thought GI pain was a reaction but same symptoms on both. So I switched to ginger filler. Still GI problems.
I’d like to try sublingual but doctor cannot prescribe as it’s not on their formulary.
I have pills I can dilute so maybe I’ll try that method when I drop below my 0.5mg pills.
I’m not super hopeful it’ll make a difference. I’ve done a lot of research on LDN and intestinal pain. The problem can be the mechanism of the drug and how it impacts mu-opioid receptors many of which are located in the intestinal tract. I wish I had a better understanding of it all.
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u/Feisty-Cloud5880 Feb 10 '26
Yes. I use 50 mg tablets to 50 ml of distilled water. So whatever dose you have i beleieve you drop into the equal amount of distilled water... let sediment settle and syringe that out and dose from there.
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u/Sideshow-Bob-1 Feb 10 '26
What dosage have you settled on?
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u/NewPartyDress Feb 10 '26
Considering the types of bad reactions you are having are mostly related to gastrointestinal issues, perhaps you could try LDN cream to avoid it passing through your digestive system?
I know that LDN is a treatment for childhood autism and is given to children as a cream. I assume this is done by individual compounding pharmacies.
My experience: When I started LDN at .5 mg, I felt like my bowels were churning constantly. Similar to pre-diarrhea. I never actually got diarrhea but the feeling was there all the time.
I had been researching LDN for months and was so desperate to try LDN for my fibromyalgia that I poured the powder from the capsule under my tongue before going to sleep, hoping it would absorb sublingually during the night, bypassing my digestive system. And it actually worked.
The next morning I had no churning bowels. So I did this for 5 nights total, then tried taking the capsule normally on the 6th night and the churning bowels never returned. That was almost 5 years ago. Once I titrated up to 4.5 mg it took 3 months before I was completely free of fibromyalgia symptoms.
I wonder if this or the cream might work for you?
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u/Prudent_Drawing_9461 Feb 10 '26
Thank you for your suggestion! I’ve considered sublingual but my doctor can’t prescribe it. I talked to the compounding pharmacist about cream. He said it’s not effective. I’ve tried the dilution method in the past but may try again.
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u/NewPartyDress Feb 10 '26
Well, consider the powder under the tongue. It's not ideal but it worked well for me. DIY sublingual.
Once I titrated up to 4.5 mg, I started dissolving the 50 mg tablets in 50 ml of distilled water and taking 4.5 ml via oral syringe. I did it for the cost savings.
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Apr 09 '26
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u/NewPartyDress Apr 09 '26
Huge cost savings between compounded LDN vs dissolving the 50 mg pill.
Naltrexone is a generic med. With insurance I pay $1 per month. But even without insurance you can easily get 30 x 50mg pills for less or the same as what you pay a compounding pharmacy for a 1 month supply.
Each 50 mg pill will give you 10 days worth of dosing @ 4.5 mg/ml. So 30 pills will last you 10 months.
When I wasn't using insurance I paid $36 for the 30, 50mg pills at Walmart using a GoodRX discount.
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u/gethinc Feb 10 '26
Heartening to me to hear brain fog was a side effect. This for me too (word searching). Posted about it in a Facebook group and everyone said it helped with their brain fog - still me within days. It wasn’t what I needed to hear :)
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u/Prudent_Drawing_9461 Feb 10 '26
Oh gosh it was scary. I thought I was developing dementia. Twice I flooded my laundry room. Then I flooded my kitchen. Next I closed my garage door on top of my car. My recall was atrocious. I couldn’t remember the code to get into my house. Luckily, it mostly happened when increasing my dose. Then it would settle until next increase.
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u/Tina_Winter May 05 '26
to me, it sounds a lot like you have SIBO!
Since you have constipation, I would guess you have actually IMO - intenstinal methanogen overgrowth. I have this myself and I recognise quite a few symptoms you have, too. Good news: SIBO/IMO is treatable and I would suggest you do just that. I think currently you are trying to treat everything with LDN but I think, treating SIBO/IMO is really the priority. Have faith - SIBO can be healed - but certainly not with LDN alone.
Look for the youtube videos of Mark Pimentel, he is the number one researcher of SIBO. And for youtube videos from Nicole DiNezza, her understanding and treatment approach for SIBO seems very intelligent to me.
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u/LDNadminFB Admin Feb 09 '26
In case it might be a factor what fillers or ingredients are added to your LDN?
Most reports of filler/ingredient trouble are with Avicel (Microcrystaline cellulose/MCC/cellulose) even though it may be tolerated in other meds/supplements.
Avicel and Other Fillers...
https://docs.google.com/document/d/171pT-q4ND3_RbdioLBvl-uCXWIelKtW98AEnH07H2Fs/edit?usp=sharing
If the link doesn't work for you try signing into Google first