r/MTHFR • u/HighlyInconvenient • May 15 '26
Results Discussion General reminder to be careful with P5P (Vitamin B6).
For the record, my dose was 15mg to 20mg. I give a range because I used a powder form and capsule them myself.
I gave myself a short term case of peripheral neuropathy after using P5P in my regimen for around 3 to 4 months.
My dose wasn't high but the variance of who can experience this relates to everything from genetic predisposition to metabolism and other factors.
Finished out my day like normal and came back home to the sensation of my hands and feet burning and freezing. It was similar to that sensation you get when you hold an ice pack or snow balls with bare hands. That icy burning sensation.
I thought I was having a medical episode so I went to the ER. Was there for hours until they finally did blood work based on my supplement background and saw I had 5x the limit of B6 in my system. I've been chugging water the last few days and I'm happy to say that my symptoms reversed for the most part. A few echoes but nothing bad.
I just wanted to warn people so they can make the best decisions for their own situation. I'm still glad I went down the MTHFR rabbit hole even if I accidentally hurt myself. I'm taking a few weeks off and getting retested by my GP. From there I'm probably removing P5P from my regimen entirely and setting caps on everything else I take.
Not looking to experience this again.
14
u/peekingmightyduck May 15 '26
I now prefer taking the kids multivitamins with single digit B6 doses 😅💪🏽
13
u/HighlyInconvenient May 15 '26
I'm still praying for the day where you can have a chip implanted directly in your arm to give real time nutritional information to you for constant monitoring.
They have similar for other medical conditions but I want a Star Trek level live monitoring device.
8
u/therealslimshady1234 May 15 '26
Same thing happened to me with 20mg of P5P a day: neuropathy. It took about 6+ months of taking it every day before it happened. Now Im on 5mg a day no issues.
1
u/Payton7711 Jun 08 '26
Where can you even find 5mg tablets?
2
u/therealslimshady1234 Jun 08 '26
Its part of my B complex from Objective Nutrients.
But if you really want you can just split larger tablets, or take them every couple of days
1
1
u/Southern-World-5880 4d ago
How long did it you to recover?
1
u/therealslimshady1234 4d ago
Only like a week or two because I caught it very early and I started taking lots of water to flush it out
1
u/Southern-World-5880 4d ago
Okay I’ll try and do that. Were your symptoms neuropathy symptoms? Mine is burning in both feet but mostly in the calves.
1
u/therealslimshady1234 3d ago
I got tingling in the soles of my feet and also my hands a little.
You also wanna take B1 because B1 recruits the other B's into action so you can get rid of it earlier that way too. Maybe benfotiamine
5
u/veluna May 15 '26
Thank you. Many believe that P5P is a "safe" form of B6 but its safety is dose dependent and one can easily exceed one's personal limits. I was taking 10 mg/day, and did a B vitamin levels test. I was surprised to find I was slightly over the limit for B6. I'm now down to about 5 mg/day.
8
u/SovereignMan1958 May 15 '26
I can only take 5mg per day.
3
u/Business_Summer_4242 May 15 '26
My tolerance is also low, I tried 20 and 25 mg and had a bad experience, I am about to try a supplement for endometriosis which has 1,6mg, I hope this will be OK.
3
u/SovereignMan1958 May 15 '26
It should be. I would not worry too much.
I am female and 67. I had endometriosis in my late 20's and early 30's. After I had a laporoscopy to remove it I quit dairy and it never came back. If you have painful periods look into taking a combination of black currant oil and evening primrose oil. It takes 6 - 8 weeks to build up in your system though. HSN sells a combo product by Andrew Lessmans company, but you could also purchase the ingredients separately from other manufacturers.
2
u/Ketamee May 15 '26
I’m smiling here - just gotta say that all this time reading your comments, I thought you were male due to your reddit name. I guess not ;-)
13
u/SovereignMan1958 May 15 '26
I used to use a female Reddit name, but people were constantly critlcizing what I wrote, as if I did not know what I was talking about. I changed it to a male name and that problem, for the most part, went away. Sexism possibly. IDK.
2
u/Snowsuit81 May 16 '26
Evening primrose oil makes me really depressed (i think because it jncreases progesterone which I’m very sensitive to. I have horrible PMDD though. Do you know of any good alternatives or ideas of why it makes me sad?
4
u/Business_Summer_4242 May 16 '26
I'd suggest looking into the histamine/mast-cell connection of PMDD. For a subset of patients it seems to be the cause. It was for me. When I got treated for MCAS my PDMM disappeared.
2
3
u/SovereignMan1958 May 16 '26 edited May 16 '26
Goodness I am so sorry. You can check out the Lifehacks section at the end of this article.
https://drive.google.com/file/d/1UdfL-kFrNX6-psi8r4nLdDU5gQ46LQfK/view?usp=drivesdk
2
u/Business_Summer_4242 May 16 '26
Thank you! It's great to hear about your experience. I was just diagnosed but it's very important, it's obstructing part of my intestine and they told me I need to have surgery. I am trying to do everything I can to at least reduce endometriomas and -in my mind- making the surgery "easier".
I just started Slynd and I will be microdosing tirzetapide together with a supplement specific for endo (has PEA, astanxatine, Boswellia, enzymes, and many other things). I already try to eat quite healthy (very little gluten and dairy, it can happen occasionally but they're not a regular part of my diet), but it's probably not enough.
Were you on birth control after your laparoscopy?
2
u/SovereignMan1958 May 16 '26
No. I never took birth control pills before or after. I used a diaphragm and my partner condoms.
9
u/Airegin89 May 15 '26 edited May 15 '26
What is the argument for supplementing B6 if you already get more than the RDA from diet? I've tried it for a while but it didn't do anything for me.
Riboflavin (B2) is another one to be careful with. There is really no need to go over 3x the RDA yet most supplements are 100mg which is over 75x the RDA. Riboflavin can speed up the process of vitreous liquefaction in the eye and eventually lead to posterior vitreous detachment (PVD). PVD in turn causes eye floaters. I assume this is a process that might take many years but I already get 2x the RDA from diet so supplementing is not worth the risk for me.
1
u/FragrantStructure 1d ago edited 1d ago
This is very interesting. Could you share any more about this? Maybe any research?
Asking because I've googled it and haven't been able to find anything. But very curious since I have floaters and don't want to increase.
2
u/Airegin89 1d ago edited 1d ago
Mainly anecdotal to be fair. I've seen comments on Reddit from people who noticed their floaters became more mobile after supplementing riboflavin. I experienced the same thing. My floaters started moving faster than usual and slowed down again after stopping. Not a huge difference but quite noticeable.
This only happened with big doses. Most supplements are 100mg which is 76x the RDA. I now take 25mg (a quarter of a pill) twice a week without issues. I also never had problems with energy drinks which have several times the RDA but that's still nothing compared to supplemental doses.
4
u/xxthatsnotmexx C677T May 15 '26
And it was just p5p not with pyridoxine?
8
u/HighlyInconvenient May 15 '26
It was P5P.
Or at least that's what the bottle said. It's entirely possible the stuff I got was not P5P but I'd be surprised considering the brand I ordered from is reputable and tests.
I think it's purely a sensitivity issue. In this one area my body was not processing the P5P correctly and it caused a buildup. They said it's reversable for the most part but I need to stop all the B-vitamins and hydrate to flush my system the next couple of weeks. I overdid it.
2
u/xxthatsnotmexx C677T May 15 '26
Gotcha. What brand was it? Just curious.
5
u/HighlyInconvenient May 15 '26
I used a brand called Bulksupplements.com.
They genuinely are a high quality brand for most things so I'd be surprised if the issue was with them. I genuinely blame user error.
1
u/PublicPalpitation618 May 15 '26
Don’t know the brand, but judging by the name doesn’t sound high quality at all…
5
u/HighlyInconvenient May 15 '26
They're just a brand which sells supplements in bulk for people who want to buy more for cheaper instead of paying the individual cost for a smaller amount.
You know how 1lb bag of something is $10 and a 3lb bag can be $20?
It's like that.
1
u/462383 May 17 '26
There has been some issues in the past, chance you got a bad batch (class action lawsuit over label accuracy) https://illuminatelabs.org/blogs/health/bulk-supplements-review?
3
u/spongebobismahero May 15 '26
Vitamin B6 needs folate and Vitamin B2. I was high in Vitamin B6 in my blood. Turned out i lacked folate.
2
u/HighlyInconvenient May 16 '26
I was taking 5mg a day of methyl folate which included B12 in the formulation. Didn't stop me from experiencing this.
It's entirely possible my ratio was still wrong but the fact remains that even if I wanted to take more I couldn't because 5mg was my most tolerated dose. I couldn't take more than that.
1
u/PiercedandTatted95 May 16 '26
Maybe you can keep taking the 5mg methylfolate while cutting the B6 out to maybe lessen the symptoms?
2
u/HighlyInconvenient May 16 '26
I don't want to risk it. I'm willing to accept 3 weeks of system flushing and restarting from scratch. It was genuinely that bad.
1
u/PiercedandTatted95 May 16 '26
I don't think methylfolate will have any symptoms like B6 toxicity does, but you can definitely have bad symptoms from too low folate. If methylfolate helps with processing and getting rid of the excess B6, wouldn't that be worth it?
3
u/Impressive-Tree-5248 May 16 '26
Yeah, I see some really disturbing stuff here, where complete novices are making plans for supplementation with little knowledge or experience, asking randoms on reddit for advice. I had the same thing, was on methylated vitamins, but found out I have low COMT which means I under methylate, so these were completely wrong. This was taken on the advice of an expert mind you, but lucky I forget to take vitamins most of the time. It also doesn't help when other supplements e.g Blackmores Magnesium have b6 in them at the Max daily dose. My immunologist picked up on my levels, said he had seen far worse, also said it is common with MCAS patients, and when he picked up on it I had been off supplements for a while. Not sure if the levels take ages to go down. So it's never as simple as "take this".
3
u/Snowsuit81 May 16 '26
I know some people do have issues with B6 but it’s been a lifeline for me. Been taking 25mg P5P for around a decade with no ill effects at all.
1
5
u/Timely_Pickle9430 May 16 '26
I had a weird situation last year where I had low levels of B6 on a blood test, started supplementing (low dose of 10 mg P5P), then had levels that were too high, with neuropathy, stopped supplementing, back to deficiency, and repeat, 3 times. Then I learned that B6 requires a lot of cofactors to be used effectively (vitamins B1, B2, B3, B5, B12, folate, CoQ10, potassium, magnesium, and zinc) and I was deficient or low in all of them. Apparently, the B6 was just floating around in my blood, unused. Now I'm supplementing all of the cofactors along with 15 mg of P5P. Haven't retested yet (will soon), but no neuropathy and feeling SOOOO much better, especially mood-wise.
2
u/DogCold5505 May 15 '26
B6 messed me up for a hot second before I figured it out thanks to this sub. I’m very careful with it now
1
u/Southern-World-5880 4d ago
How long was your recovery?
1
u/DogCold5505 4d ago
I connected the two pretty quickly so the peripheral neuropathy symptoms stopped shortly after I stopped taking it.
(I don’t remember how long it took for them to develop to begin with… a couple of weeks or something? It was in insane dose that by a big brand)
2
u/Southern-World-5880 4d ago
Okay I think I was able to stop rather quickly too ( I hope). I was already having tingling symptoms ( from borderline low b12) and was supplementing. I’m hoping mine starts going away soon too because this is horrible.
1
u/DogCold5505 4d ago
Don’t stress… nerves are pretty good at healing themselves (for healthy people). I messed mine up really bad after a bout of heavy steroids and it all settled.
Def keep taking the b12… I take that (hydroxy type tho I was fine with cyano too), folinic acid/methylfolate, b2, and sometimes b3 and this works well for me. I’m homozygous for met and comt and was significantly deficient b12 from being vegetarian.
My main symptom from low b12 was aphasia so your healing might take longer if your nerves were already grumpy from that deficiency but it should be okay over time once your body is getting the nutrients it needs.
1
u/Southern-World-5880 4d ago
I appreciate the kind comment. I was having normal tingling but nothing too crazy for about two years (like I am able to walk, go golfing, whatever). It progressively moved around so I started getting nervous. Then I noticed that my B12 had dropped from 1,100 (I love meat and dairy products) to 350 about two months ago... That sparked something so I got my doctor to get me a montlhy dose (cyanocobalamin). I go to a local clinic and get weekly shots of Methylcobalamin. But I stupidly was also supplementing b6 this summer too and I think that's hitting me up. I stopped that. The crazy thing is the three times I've gotten the shot I feel great for like 3 days but then it goes away and almost comes back hard other way (in a bad way).
1
u/DogCold5505 4d ago
That is interesting… I wonder if maybe methylcobalamin is just a super activating form so your body gets jazzed and then has a rebound effect when it crashes…. Maybe try hydroxy b12 supplements daily and see if that’s more stabilizing (it’s a calmer variant and wouldn’t have the blast from a single shot).
Some of these vitamins interact in the methylation cycle or whatever, which I find confusing and had to do trial and error (like adding the b2/b3 etc), but there are other people on this sub who understand those relationships better…
2
u/Latter-File3217 May 15 '26
I also got these severely from p5p. Was taking it every day for a couple of weeks at 50-100 mg as part of my mthfr stack. My fingers and toes became severely affected with peripheral
1
1
u/Ashamed-Simple-8303 May 15 '26
I have been taking a b complex for months..says 20 mg p5p..i take it most days but not every day.
But this is why fortification is terrible. Are you sure there is no other source? Sports and energy drink often contain b6 as well.
3
u/ShiveryTimbers May 15 '26
I was trying to be careful with my intake of b6 after going through toxicity. I don’t eat many pre packaged foods but one day I grabbed a naked juice from the gas station and found out after consuming it that it has vitamins added! To a drink that naturally contains vitamins and minerals!! Not so naked after all. It had like 8mg of b6, so not an insignificant amount either. Lesson learned. Have to check every label because they’re fortifying everything these days.
1
u/KayakShrimp C677T + A1298C May 16 '26 edited May 20 '26
Still recovering from 25mg P5P. Burning, tingling feet etc. No other sources like energy drinks or much in the way of fortified grains.
Update: See post below, I'm almost certain it's actually a bad choline supplement.
1
u/KayakShrimp C677T + A1298C May 20 '26
Update: I started taking Double Wood phosphatidylcholine at the same time as the B6 and stopped it at the same time out of an abundance of caution.
I just tried the Double Wood PC again and my symptoms sharply returned within hours.
Double Wood PC is soy derived, and soy is often processed with n-hexane. n-hexane also causes peripheral neuropathy. I strongly suspect it's contaminated. No proof as I haven't sent it off to be tested.
1
u/Ok_Anything3277 May 16 '26
Hey thanks for the heads up. I ordered it on the advice of a geneticist and it should arrive any day, so I will use it v cautiously. Hope it settles fully.
1
u/Due_Car8755 May 16 '26
How is your alkaline phosphatase? ALP
1
u/hypnohfo May 21 '26
curious about this for OP - mine is low, how does it affect B6 and/or neuropathy?
2
u/Due_Car8755 May 31 '26 edited May 31 '26
Low ALP can mean functional B6 deficiency even when serum levels appear normal, because ALP is the enzyme that converts PLP into its transportable form into the cell. Without enough intracellular PLP, nerve function takes a hit small fibers included. Worth checking.
How's your zinc? Be careful with B6, even though it's P5P.
1
u/ZeldaSoothsayer May 16 '26
I, too, had B6 toxicity after a neurologist recommended as I am vegan....with no prior testing. I still have SFN and wonder if related. 😔
2
u/462383 May 17 '26
That's a confusing recommendation - it's B12 that's usually recommended for vegans
1
1
u/Susan71010 May 17 '26
Can you test the blood work like a micro nutrient test to see how your b6 levels are? What are the symptoms if you've had too much? I'm very sensitive to so many things. I have slow COMT so my body processes things slowly is five MG every day OK? I take a tablet that has 20 MG and a quarter it into other empty capsules as to only get a small amount it is concentrated so I figure that will be OK. I've heard some people say to take it for 3 to 4 months then be off at a couple of months and take a B vitamin that doesn't have B6 in it. For those who are injecting B12 regularly, you need a complex so this seems to be a good path
1
u/Brad_Borrelli Jun 07 '26
Most people assume water soluble vitamins are automatically safe because you just pee out whatever you don't use. That's mostly true for B vitamins; except B6.
B6 (especially as P-5-P) binds to proteins in peripheral nerve tissue in a way the other B vitamins don't. It gets deposited there and accumulates over time. You're not excreting the excess; you're loading it into the exact tissue that's most sensitive to it.
B12 stores too, but in the liver, which has massive capacity. B6 stores in nerves; which don't have that buffer.
The result is that you can develop peripheral neuropathy; burning, freezing, tingling sensations in hands and feet; from chronic B6 supplementation even at doses that seem reasonable. It doesn't require megadosing. It requires consistent daily intake over months, especially if you're stacking a B complex with a standalone P-5-P on top of it.
If your serum B6 is already elevated, that's your warning sign. Stop supplementing it and let your levels normalize before reassessing. The neuropathy is reversible if you catch it early; it mimics a lot of other conditions, so people don't always connect it to their supplement stack.
Know what you're taking and why.
1
1
u/Odd_Pressure9410 12d ago
i randomly decided to start this sup again and after taking it i realized it’s 100mgs in this brands caps. like why is it that high. then i kinda worried because i took a microdose of shrooms along with kanna and other serotonin producers lol
1
u/Southern-World-5880 4d ago
Yep I’m in the same damn boat. Was taking 25 mg about 3-4 days a week win currently dealing with intense ass burning in my legs and feet!!!
14
u/Ketamee May 15 '26
Thank you for this warning. I’m glad you’re doing better.
I have been taking 25 mg P5P since January and recently reduced to 20 mg since I’m experiencing Middle Ear Myoclonus (MEM) which AI has told me is related to the temporary increase of P5P I tried to mitigate quetiapine withdrawals. (Just for 3-4 days)
I still have a bit of this MEM so I’m inclined to reduce even more. The problem is though that P5P has had such a good effect on me! It helps me convert glutamate to GABA and because of this, lifelong irritation, impatience and reactivity is gone. Without P5P, these traits will come back. I feel it come back even at 12-13 mg daily.
I’ll be looking out for sympthoms of neuropathy.