I have been toxic on B6 for quite some time with dosing just 30-40 mg of P5P. I only figured it out after running out of the supplement. It really made me more anxious and depressed and made my gait very strange. Modern medicine says that under 100mg is safe. Looking back, the worsening of symptoms were gradual and thought it was my PD progressing. It’s weird because I know b6 is vital in making dopamine, but too much is like not having enough.
Be careful with B6/P5P: I have been toxic... - Cure Parkinson's
Be careful with B6/P5P
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38yroldmale
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How do you determine how much B6 to take? Are you also taking B1?
I know a lot of neurologist say to not supplement b6, it can block the c/l getting to the brain. But b6 is a vital part of dopamine. Some would take b6/P5P between c/l doses. I would do that and also before bed. One of the reasons I started supplementing b6 is I did DNA testing and it stated I had a problem with b6. Should have known it was wrong because the same test said it was very unlikely to get PD. Yes, I also take b1.
My neurologist didn't advise about B6. But in the B1 therapy I understood that you needed to be careful with B12 and B6 because one could deplete the other?. How much b1 are you taking? How do you know the correct amount of B12 and B6 to take? Thank you for your help
I am currently taking 500 mg of b1. I am still determining my dose, I believe it’s going to be too high. I have done b1 before but over time 100 mg would give me overdose symptoms. I do so many things it’s hard to tell what working but I have been able to lower my dose of c/l that I believe I’ll be able to get off it. I have found the b2/removal of red meat has been really helping.
pubmed.ncbi.nlm.nih.gov/145...
Our experiences seems also similar with regard to B1. After about half a year of 100 mg of supplementation per day, the recently measured B1 level is far too high. Although specialised neuropathy doctors report a risk for neuropathy in excess thiamine, I have not found any studies demonstrating Thiamine toxicity for conventional doses. However, given my problems with B6 supplementation, I have also decided to stop taking B1 for the time being.
Your B1 level being high is exactly what Dr. Costantini saw in his patients when he first started giving them HDT. He would test them before B1 and mainly saw levels that were in the normal range, but once they started B1, the B1 level was off the chart. He said he saw this repeatedly and eventually stopped testing B1 levels in his patients.
Art
However I also noticed the importance of gaining the balance between the B vitamins, especially B1, B6 and B12 for the control of PD and PN. My recent experience is that this is fragile, even with small modifications it can be disturbed and apparently also with some others. Although I certainly consider it possible that the thiamine in high doses can have a beneficial effect for many, given the resulting PN vicissitudes, it seems too high a risk that the situation will get even further out of hand. So beter to continue to look at the measured values for now, at the moment my only grip.
you need to join the fb Parkinson’s b1 therapy group and read Daphne Bryan’s book of the same name for the true facts. High dose b1 has changed my life for the better
Thanks for this report. I shall update my recommendations accordingly.
I know it’s helped a lot of people to supplement b6, so I questioned even making this post. I just wanted people to be aware. PD is complex as hell!
So what was your dosage of c/l at the beginning of therapy and what is it now ?
Or better put: what’s your highest daily dose and what is it at present?
I was on 48.75-195 of Rtary 3 times a day. Now I am 36.5- 145mg twice a day. I could go less but my insurance is a problem.
If you don't mind my asking, which brand of P5P were you taking?
I really appreciate your information and help. Keep it coming
You cannot overdose on b12. I take shots 2 times a week for over a year. That and Folinic acid has really helped. MTHFR cannot use Folic acid. Methylfolate works for some but made me feel crazy!
Thanks what depletes b6?
Levodopa medication.
This is quite coincidental that I have more or less the same experience and reported it on HU in recent days. I am very ‘happy’ that I do not appear to be the only one who has problems with the breakdown / absorption of vitamin B6 and also the so-called safe P5P. Indeed, it seems like a Gene-determined problem that turns out to have a toxic effect on the B6 stack. In addition to an inhibitory influence on the C/L medication, a further evaluation of peripheral neuropathy with such damage to the nerve pathways that it has become irreparable. I hope for you that this has been spared you. But take care, the initial B6 deficit has exactly the same effect. Here is the link to the recent experiences.
healthunlocked.com/cure-par...
healthunlocked.com/cure-par...
This reaffirms the importance of the call 5 months ago. In any case, have your b6 value tested, but better all b vitamins!!! 🍀
If you haven't already seen this, it may be helpful for you minus the B6 of course :
healthunlocked.com/cure-par...
Art
My husband’s B6 showed up as dry high in a blood test. Coincidentally there was a news report that night saying that our TGA (equivalent to FDA in the US) was reaccessing its recommendation of dosage in light of reports of overdosing. The one case mentioned on the news indicated that it took this person 6 months for his extreme symptoms to disappear. My husband was taking P5P activated B6 31.34mg (equivalent to pyrodoxine B6 of 20mg. Whatever all that means!
Gwendoline
There was an interesting study on melatonin that revealed the same pattern… by reducing any thing that worsens a symptom things will improve… your clearance of anything you add is the half life which is different due to your metabolic rate… we are not all the same.Finding a dose that works is just as important as finding the right supplement…
I hope that brings you some ideas.
Little_apple in reply to
Will you please explain how melatonin releases the same pattern? I’m trying to understand this. Thank you
in reply to Little_apple
Yes I think you are questioning the actual hormone melatonin in relation to P5P and vitamins...I was using melatonin as an example of tolerance...it is produced by infra red spectrum of day light by the brain and the gut...the mechanism of homeostasis...the body normally corrects things that go too far one way... but people trying to correct melatonin levels artificially often make things worse... this is never fixed by trying to increase one chemical pathway...it too complex.
It seems hormones that are produced by the body have a mechanism that stops overload, but when we try to use supplements...its all pushing one way....so the body and brain build up tolerance quickly to try to correct the imbalance.
Little_apple in reply to
Understood. Thank you. I think that it’s not just the case with supplements but can be even more the case with pharmaceuticals. Is that a valid belief? For every intervention added, there is a counter biological response to the intended biological response. And over supplementing or medicating can downregulate the natural process like in melatonin. I hope if I am wrong (as I often am) that you will please correct me.
in reply to Little_apple
No I think you have about the same gist of this as I...
Most of intervention has a price...better to figure out why before you meddle with the processes that took years to evolve.
I'll give you an example of the importance of a fine balance. When I started various adrenal cocktail recipes to restore and balance minerals that tested low, I eventually got a bit careless and occasionally started drinking coconut water straight without balancing with salt/minerals to replenish K faster. Boom! One day hyperkalemia symptoms kicked in in the middle of a HIIT exercise and I immediately recognized I overdid it with potassium and had to go into recovery mode while drenched in sweat with shortness of breath. This happened with natural organic food beverages no less resulting in a serious electrolytes imbalance, but I'm sure I'm one of many undocumented cases out there despite lower formal incident reports. researchgate.net/publicatio...
Most drugs including pharma, alcohol, refined foods, extreme diets, persistent stress, or toxins can deplete certain nutrients over time, and the mineral/vitamin imbalance can take much longer to materialize with metabolic/enzyme dysfunctions after long homeostatic shifts over the years, and unfortunately, the symptoms tend to be much less dramatic to catch/address in time allowing disease process to kicks in.
a bit unrelated, but…
“Many people with elevated levels of glutamate do not do well with methylfolate or any type of folate until the levels of glutamate are balanced. This is because excess folate breaks down into glutamate. “
Glutamate is excitatory. Excess is bad for Pd and can make RLS worse.
I have high B12. 😳. Maybe I’m overmethylated? And maybe the high B12 is increasing glutamate and causing the increase in RLS?
This might be worth it?
“Urine Amino Analysis: gives you an overall average of glutamate and GABA levels. However, this test can be unreliable as it is cannot tell you if glutamate is pooling in certain areas of the brain, which is often the case.Blood Test: simple bloodwork can test for blood plasma glutamate levels. But, this test is also unreliable as it will give you an overall average instead of a clear picture.Advanced Labwork”
tacanow.org/family-resource...
I’m never sleepy. Always wired. I get tired but not sleepy.
And that’s amazing about the electrolytes. I don’t quite get it. I need to learn more to grasp it. My RLS is driving me CRAZY
Going to bed, but try glycine near bedtime to test your theory- it’ll dump excess methyl donors and help reduce glutamate levels.
Very interesting. I take magnesium glycinate but not daily.
Learning more about methylation brought me to COMT
“The catechol-O-methyltransferase (COMT) gene is of significant interest to neuroscience, due to its role in modulating dopamine function. COMT is dynamically regulated; its expression is altered during normal brain development and in response to environmental stimuli.”
pubmed.ncbi.nlm.nih.gov/210....
COMT is associated with OCD. I definitely have OCD tendencies and so did my Dad with PD. I’m prone to hyper vigilance, etc. This is all so confusing but extremely interesting.
I was suggesting trying a pure glycine powder on its own for a sleep aid to dump methyl donors while it metabolizes. It's pleasant subtly sweet tasting when added to warm tea. Though magnesium glycinate would be a worthwhile substitute if you don't have glycine at hand, and many people find it calming because of the amino acid glycine, while people find magnesium malate with malic acid has a more stimulating effect on the body for increased energy and alertness better suited for AM application.
I mentioned COMT gene to you a while back and some people have polymorphism that affects the breakdown of neurotransmitters. That's why I was urging you to test for genetic mutations before and the findings will most likely also apply and help your children. The below test isn't a good value compared to a more comprehensive testing package testing other mutations that I recommended in the past, but linking the info for additional detail.
lifeextension.com/lab-testi...
Much (or most) of what you told me long ago flew past my ignorant head. I was never dismissing it but it was so beyond my comprehension that I was just not capable of understanding. So now I’ve graduated past clueless to the point where I’m saying “how about xyz?!” not recalling that you suggested xyz patiently and probably repeatedly 2+ years ago.
I want to go all out now with the testing! No downside to it. What is most comprehensive?
seekinghealth.com/products/...
He had an extensive testing program that he appears to have discontinued.
I will try glycine (I like to rotate, not same every day, it’s complex) I take serine.
Practically any genetic test available including 23&me can provide your with raw data which you can parse for information. There are so many genetic testing services becoming available with more affordable and accurate whole genome sequencing, but COMT data can be found with even most mundane widely available testing often costing less than $100 on sale. This is another one I used since I don't want my data public with 23&me, but it's not a good value and rather limited compared to other genetic sequencing tests especially when not on periodic sale. Download and read the sample report.
lifeextension.com/lab-testi...
Ordering cheek swab test. Thank you!!
❤️🤓❤️
I managed to get the test for under $200 on a sale in the past, so currently it's pricey. Just understand that once you get into genetic mutations, you'll see that test is very incomplete and you'll eventually want more data, You're better off getting a whole genome sequencing at that price level.
"seekinghealth.com/products/...
He had an extensive testing program that he appears to have discontinued."
btw, that is just a translation/reporting service once you already have 23&me data. I'd say that's rather expensive since you can find free services online to interpret the raw data.
I remember he was promoting about upcoming comprehensive useful genetic test a few years back but it looks like that got stalled.
in reply to Little_apple
I think your relief will come through magnesium therapy… try using a spray on your legs with magnesium water … or even soak a face flannel in the stuff and leave it on areas that twitch glycinate or citrate is well absorbed through the skin… or orally at night will make some difference…. Up to 600 mg capsule once a day….
Are you on PPI’s?
Some reading material on methylation and magnesium…
mthfrsupport.com.au/2018/12...
Little_apple in reply to
Thank you for the link.
“COMT – Catechol-o-methyltransferase plays a major role in regulating our neurotransmitters, or brain chemicals, such as dopamine and our adrenalines, epinephrine and norepinephrine. COMT issues have been implicated in neurological disorders such as Parkinson’s disease[19].”
Interesting!
I’m wondering if I might be overmethylated.
“of over-methylation. High levels of free copper are also noted in those shown to be over-methylating, which may lead to irregularities in thyroid function, adrenal hormone production, and lower histamine levels“
“Methylation status in the body can be determined by measuring whole blood histamine, as histamine and methyl are inversely related. Low blood histamine levels indicate that the individual will be overmethylated; high levels indicate undermethylation.”
Getting histamine tested sounds like a good idea to indicate methylation status.
methyl-life.com/blogs/mthfr...
"High levels of free copper are also noted in those shown to be over-methylating, which may lead to irregularities in thyroid function, adrenal hormone production, and lower histamine levels."
This means copper toxic, and not enough bioavailable copper contributing to enzymatic/metabolic processes. Part of why I asked you to watch and understand Wilson's disease to study the mechanism. Posting here for others.
Rescuema,
“Most drugs including pharma, alcohol, refined foods, extreme diets, persistent stress, or toxins can deplete certain nutrients over time, and the mineral/vitamin imbalance can take much longer to materialize with metabolic/enzyme dysfunctions after long homeostatic shifts over the years, and unfortunately, the symptoms tend to be much less dramatic to catch/address in time allowing disease process to kicks in.”
Exactly!
I would add just one point which is the fact that some minerals compete with each other as well as with some toxic substances and drugs.
IMO The body, lacking a mineral or vitamin, will take a different substitute to build proteins and for the functions necessary for life, but they will be poor quality products with all the negative effects, primarily premature aging. IMO one must never unbalance the body with excesses or deficiencies and one must have sufficient reserves of all essential substances and leave it to the cellular intelligence to use them when needed. Here we have a “what” and a “how” to take supplements that get a little personalized but always based on general guidelines. Here a simple guide as an example which I find particularly interesting in the minerals section.
To solve the shortcomings you don't have to be complicated but a little knowledge is necessary.
(I don't sell anything!):
gandgitalia.it/blogs/nutriz...
in reply to Gioc
The main player seems to be Magnesium… it regulates up 300 enzymes responsible for hormones and normal body function…. But the overlooked is it the main switch for ATP for a reason… if the body tried to use potassium calcium or sodium.. then it would act like a boxing match without a referee.
Gioc in reply to
Yes Jomico,
In my opinion here comes the “How to take.” It tends to be. complicated, I take calcium/magnesium 2:1 acidified with apple cider vinegar in the evening. it removes cramps, relaxes the muscles and normalizes the intestines, Helps with b1 solving the greater demand for Mg and Ca in HDT.
Hi Gio,
"I would add just one point which is the fact that some minerals compete with each other as well as with some toxic substances and drugs."
Indeed, absolutely!
Anyone who attempts to balance their mineral will often find the intricate tug-of-war relationship of all necessary minerals in the body. For example, sodium and potassium ratios have a direct effect on the crucial copper and zinc balance, etc. Calcium and magnesium also have opposing forces on sodium/potassium, etc, etc. See the study on copper deficiency in the PD brain that I posted on the below thread. I was on a copper rant on that tread because I'm currently working on increasing bioavailable copper myself.
healthunlocked.com/cure-par...
"To solve the shortcomings you don't have to be complicated but a little knowledge is necessary."
This, I don't agree with, as the subject gets quite complicated and difficult to address, and most allopathic health professionals are also lost on the subject. 😒
after bloodwork showed I had extremely high b6 levels I stopped supplementing b6 which was a baby dose at that time
All I can say here is thanks for the heads up!
My spouse has been using 100 mg B6/P5P per day for years, with no problems. Her Carbidopa usage has never crossed 75mg.
As I also use DopaBoost, there would be times I do not use P5P.
Currently I alternate C/L and DopaBoost, and 100mg is in place to counter the 75mg of Carbidopa she ingest Monday to Friday. I step her down to 20mg per day on a weekend.
Not going to change my stance on this important nutrient that Carbidopa destroys*. But I shall keep my eyes open.
🌺🙏🏾🌺
Edit:* it might be more accurate to say Carbidopa suppresses B6 as a co-factor in critical enzymatic reactions.
B6 and C/L compete in crossing the BBB. If these two taken apart, at least 2 hours away from each other, it should be/is safe.
Very interesting conversation. It can get very overwhelming. For my HWP he supplements a few days a week with PSP taken away from C/L. His B1 is sublingual so he is only at 100mg. Interestlying a micronutrient panel completed before his diagnosis of PD indicated choline and B5 very low, not any of the other B vitamins.
That’s an interesting combination: Choline and B5. That combo make acetylcholine. Pay attention here, memory problems are likely 🌹
Yes after he started meds for PD as well as Choline w am n lunch meds and a B multi a few days a week blood panel normal. His biggest indicators something was wrong before correct diagnosis were sleep problems, cognitive issues and overall body pain. Misdiagnosed for 18 months, then he started having a few freeze epidsodes too. Thought he was going crazy, it was horrible, it was a good psychiatrist that diagnosed him and told us to go to a center for excellence center. The Director of movement MD at local hospital said not PD 2 appt a year apart. Wrote all symptoms off on poor sleep. Lazy doctor. He suffered for 18 months longer bc of her.
yes, with b6, the dose determines the poison. Don’t go too high because too much can cause irreversible neuropathy, among other things. It’s less forgiving than the other b vitamins…
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