PD, Vitamin B1 and blood testing

[CapSage88008]

I've been taking High Dose B1 for a few years, and recently noticed a worsening of my PD symptoms. I pulled out Daphne Bryan's B1 book out and read it. This helped increase my understanding of the process. I suspected that I may have "maxed out" my body's utilization of B1, so I checked my blood tests conducted since 2018 as ordered by my Neurologist.

(I think I mentioned in another post that he helped me discover before that I was way high in B6, which can permanently damage nerves. I was having difficulty walking, and found out I was blood-testing @ over 400% of "in range" levels.) Changing to a B-Complex tab with NO B6 helped lower my blood tested levels of B6 and thus majorly helped my walking.

In this case of B1, my blood tests are showing me at 495-504 vis-a-vis the "In range" being 78-185.

Does anyone have references or experience using blood-testing results to monitor if one is over-dosing B1 when applying Dr. Constantini's High-dose B1 protocol, or is it PD-Normal in this case to have (for example of 495-504) levels of B1?

And if so, can such blood testing be used to help one arrive at an optimum level intake of Vitamin B1?

[Smittybear7]

Good question. I have been taking b1,500mgs for at least two years. I work with a naturopath /pharmacist who muscle tests me to determine how much of a supplement I need. He recommended two, 500mg /day.my blood work came back at 100. It indicated high. That was taking one 500mg.So I never increased it.My last visit he said I should be taking four, 500mg/day. He also has me on b12,folate,by and a super b complete. I am nervous about going that high and concerned about too much b6.He said its water soluble and you urinate excess. So I am at a loss as to what to do.

[Esperanto in reply to Smittybear7]

It seems obvious to me that with HDT, there is an overdose. The excess simply disappears via expensive pee, as there is limited storage in the body. Due to the short half-life of a few hours, there will be no accumulation, so in case of positive or negative effects, a correction is possible within a day. Thiamine supplementation seems very safe.

You mention yourself being wary of the B6 in the B-complex. I think that is justified. While perhaps a small supplementation is needed for PWP, it appears that the doses in the B-complexes and multivitamins are far too high up to 100 mg. There is a stacking effect here due to the half-life of about a month. As a result, a daily dose of 5mg sometimes already appears to cause an overdose, as the absorption capacity in the liver is much higher. The toxicity is probably caused by exceeding the liver's ability to convert pyridoxine to pyridoxal-5-phosphate P5P causing high blood concentrations of pyridoxine leading to nerve cell damage and the dreaded peripheral neuropathy. P5P does not seem to be responsible for neuropathic damage in this hypothesis.

All B vitamins, in their active coenzymatic form, play an essential role in cellular energy metabolism through your diet. It is important that there is a certain balance and only regular testing will tell you if that is the case.

[CaseyInsights]

Why should any one on a high dose B1 protocol be surprised that they are out of range when tested for B1. That’s the whole point: you use a high dose protocol because the normal intake of B1 does nothing for you.

You cannot hope to deliberately put yourself on such a protocol and hope for a normal reading 🤯

Understand that you are in uncharted waters here: no conventional doctor would recommend such a protocol. The driving consideration is whether or not it brings relief, with no or minimal side effects.

And if the answer is yes the ‘normal’ test range provides no guidance to a Parkie 🌺

[chartist]

Dr Costantini, a neurologist and the founder of HDT for PwP, said that when he first started offering his patients HDT, he would test their B1 levels before starting them on his regimen. He found that the majority of his patients initially showed B1 levels that were in range, but after starting them on HDT, their levels were off the chart. After awhile he stopped testing their B1 levels because he wasn't seeing any B1 related problems .

Art

[Dap1948]

Blood tests might tell you how high your B1 level is but does not allow for NEED, which varies from person to person depending probably on the seriousness of their symptoms. The only way we currently know how to get it right is to listen to your body.

[Zyzygy]

Thank you for asking this, just got my B1 blood test back and it was 129. I figured that's a good thing since I'm on HDT, 200 mg daily oral. The comments helped me see things clearly.