Calling for B6 test results in PD: Unveiling the dosage dilemma

[Esperanto]

It is remarkable that there is no known study where guidelines are given on the degree of B6 supplementation while a good B6 balance is crucial in PD treatment.

Through HU, I have gathered a database of B6 test results from PD patients. Some from PWP without supplementation, and some with.

Preliminary results show indeed that measurements without B6 supplementation usually indicate a (often severe) vitamin deficiency. But the measurements with B6 supplementation, even at very small amounts of > 4mg, indicate an (usually severe) overdose. This regardless it's form, P5P or pyridoxine, and even the Carbidopa intake. Out of the about 20 test results to date almost none fell within the desired minimum and maximum reference range.It may be because the problem cases in particular are reporting.

If you or others on HU have B6 test results, so even if they show normal values, please share them with me, either publicly or through chat. Please include the following information:

- Test result with stated minimum and maximum reference range

- Whether or not B6 supplementation was taken and duration

- Amount of B6 supplementation in mg (including through B-complex, multivitamin and other combi supplements with magnesium, melatonin, energy drinks and supplements for supporting the nervous system, improving mood, etc.)

- Form of B6 (pyridoxine or P5P)

- PD patient or not

- Daily dosage of C/L in mg or separate Carbidopa dosage for example at mucuna, if applicable

- Date of the test result

- If you experience adverse effects such as peripheral neuropathy or symptoms resembling it.

The more data we have, the better we can identify correlations and potentially provide clear advice on B6 dosage. With this, if there is sufficient response, I hope to interest medical scientists to set up a responsible thorough research. The first contacts for this have already been made.

Thank you all in advance for your cooperation!

[bookish]

Hi, I don't have PD but do have neuropathy and one B6 test result, so hope you can make use of me! A neurologist tested it in Oct 2021 as I'd just been diagnosed with Small Fibre Neuropathy although I'd had symptoms of that for 21 years and of other neuro issues since around puberty (48 years ago). He was concerned that I was taking a B6 supplement (along with my many others) even though I advised him that I was taking P5P not pyridoxine and only a small amount (approx 4.24 mg). We were trying (and still are!) to rule out reversible causes, of which there are many. I had been taking vit B12 on and off for years, consistently for the last 12 years, changing types and amounts and making noticeable improvement, although not as noticeable as it was when I changed from a small amount of folic acid (in a cheap multivitamin) to methyltetrahydrofolate liquid, in 2019, which was significant for me. I did some basic testing of genetic polymorphisms and found that I had theoretical methylation difficulties, mainly COMT, which made so much sense of my symptoms for my whole life (and my improvements with magnesium etc) that I do not think it purely theoretical and treated myself as such. We have an at least 6 generation B12/folate metabolism issue which usually ends up manifesting as pernicious anaemia, underlying cause however remains as yet unidentified.

My B6 test therefore was supplemented, by 4.24 mg of P5P daily (no other B6 containing supplements), in Oct 2021. I'd been taking that for a little over two years.

Result 284 pmol/g Hb range 250-680, therefore 7.91% of range, which I decided was insufficient, so I doubled my dose to 8.48mg daily.

I would have been taking a small amount of pyridoxine in a multi (likely less than 2mg) from approx 2010 to 2017, as well as a small amount of folic acid from 2010 to 2014, although my serum folate was at top of range prior to starting methyltetrahydrofolate and dropped to midrange with a higher amount of the right (for me) vitamer. A functional deficiency of B9 or B12 can do this, and I understand it can happen with B6 also.

Can't say I've noticed improvement with the additional B6 but I had covid in spring of 2022 and that set back all of my improvements - not to the pre-methylfolate levels, but not as good as I'd been. So I increased B12, folate, NAC, etc and have improved again slowly although still not quite where I was. Viruses can affect one carbon metabolism and I suspect have hit me in that respect on a number of occasions.

Hope that is helpful, best wishes.

[Esperanto in reply to bookish]

Thank you for sharing your experience with B6 supplementation and your neuropathy. While you don't have Parkinson's disease, your test results and the impact of increased B6 dosage could still be valuable, especially if there were to be a new test that measures the effect of the higher dose. It's important to continue exploring reversible causes and potential treatments for your condition. I hope that your ongoing efforts lead to further improvements in your health!

[bookish in reply to Esperanto]

Thank you!

[CuriousMe12]

Is there a p5p that you'd recommend from Amazon

[bookish in reply to CuriousMe12]

I wouldn't personally use Amazon for supplements, although the one I use is available through them. I buy it direct from Metabolics - metabolics.com/vitamin-b6-p... . No doubt others will have suggestions too. Cheers

[park_bear]

Because Parkinson's patients are commonly deficient in vitamin B2, and because vitamin B2 deficiency can cause B6 toxicity, any person with Parkinson's testing vitamin levels should get vitamin B2 levels tested as well as B6. With regard to vitamin B6 levels, ideally patients should get tested for both pyridoxine and P5P. Typically only the latter is measured. Do not know whether tests of pyridoxine levels are available at commercial medical test labs.

An epidemiological survey of B2, pyridoxine, and P5P levels would confirm (or disconfirm) the thesis that B6 toxicity is due to low B2.

[Esperanto in reply to park_bear]

I would like to help investigate the thesis that B6 toxicity is due to low B2 levels, but taking a B-complex supplement would likely eliminate the possibility of a B2 deficiency. Therefore, getting a B2 test may be less necessary. However, if you think it is still worth considering, I may get the B2 test done alongside the B6 test next week, as long as it is not too costly….

[park_bear in reply to Esperanto]

Still of interest if not too costly.

Wondering if any investigator could be interested in doing a survey of this matter.

[Esperanto in reply to park_bear]

The determination of B2 and B1 level appears to be too expensive for a poor person like me, and as mentioned, it is likely to be of little value since I already take a good B-complex supplement. Besides, my PD is very well controlled at the moment, so there is no real necessity. If my supplementary insurance is willing to cover the costs, I can consider doing it out of curiosity later on. Priority for me was the B6 test for PD and PN, which is also not free here.

[park_bear in reply to Esperanto]

As I mentioned in the post, B2 deficiency may cause B6 toxicity, and toxicity due to pyridoxine is not measured by the B6 test which only tests for the active vitamer, P5P. If your P5P level is in range but your pyridoxine level is high, it will be toxic but the test will register OK. On the contrary, if your P5P level is high but your pyridoxine level is low, you may actually be in good shape even though the test says otherwise. How much B2 are you actually taking? If you cannot afford to test the B2 level, you may want to consider supplementing an additional amount because it is non-toxic.

Per the foregoing, if you can only afford to test for B2 or B6, the B2 test will actually be more informative.