I have gone through all the B1 threads. I have seen people taking B1 in many ways.
My confusion is whether to take entire dose together like Roy, os split like others? To be taken before food, with food or no food? will it work with IF (no breakfast)?
I have difficulty understanding where people choose 100mg over 4,000mg.
People will gladly, without hesitation take 4,000mg of other vitamins, C or E. But no, there is fear of vitamin B1.
My husband takes 500mg but it raises blood pressure so afraid to go higher but would live to go higher uncertain what to do
I think this is the most comprehensive post related to B1 dosage:
Jay,
Dr. Costantini, in his patients who were taking oral B1, always mentioned splitting the dose as half with or without breakfast and half with or without lunch and avoiding late afternoon or evening dosing as in some of his patients, late day dosing resulted in difficulty sleeping while taking the split dosing that was his standard recommendation , resulted in better sleep in some of his patients. He also stated that the full dose could be taken all in the morning dose if it did not bother the patient in any way.
You always have to consider that everyone does not react exactly the same to B1 or any supplement for that matter, so Dr. C had to take that into consideration and look for overall average effects. Many forum members have reported worsening of symptoms if the dose is too high and for some forum members, the dose is too high for them if they exceed 50 mg per day and can result in worsening of symptoms, while others report being able to go up to 4,000 mg without problem, but these dose extremes are the minority of B1 responders with the average appearing to be in the 1500 mg to 2500 mg range in total B1 per day representing the majority of patients.
Dr. C clearly stated that, THERE IS NOT ONE DOSE THAT FITS EVERY PATIENT AND DOSING IS INDIVIDUALIZED TO EACH PATIENT, based on their response to different dosing levels. The goal being to find the optimal dose for each patient that was determined by maximal symptom reduction in conjunction with the best possible pull test result. Dr. C felt that those two criteria were the main points in determining the most optimal dose for each patient.
Art
This is helpful to read all in one place. It has taken over a year of up and down dosing for my husband. I think he started with a 1000mg total dose. He weighs only 120 pounds. We've gone up to 1500, then up to 2000. And back and forth.
One thing for sure is he feels much better using B1. He could swallow his pills without choking after his first day's dose. At one time when we'd gotten him to 2000, he was losing some benefit. The B1 had helped with his speech, but that was worsening. So, I decided to lower the dose as advised by going off B1 for a while, and returning with the new trial dose.
He was very upset after skipping his morning dose. Said he felt awful. So, I learned he needed to just lower the dose, not go off B1 and then try the lower dose.
For months he was on 1500mg and symptoms were improved. Then, I noticed the blurred speech returned. So, about a week ago, our him back on 2000mg. Speech cleared. So, he is on 2000mg for now.
I've read of Dr C's patients finding their dose and continuing that and it worked well. My husband (but without Dr C of course) has had to wander back and forth. Maybe this is his final dose.
I didn't mean to write so much, but maybe helpful to someone. Very best to you, Violet
Violet,
You are correct, your and your husband's experience may be useful for others, so your information is very welcome on the forum!
Thank you very much for reporting your husbands experience as it just exemplifies how different we all are and it also illustrates how sticking it out to find the best dose for him has benefit. Clearly you can see how this also shows that there is no one dose that works for everyone.
Art
I've been taking it since November of 2018. I've taken it with food and without, first thing in the morning or waited a couple of hours. My dose fluctuates between 1 gram per day and 500 mg per day. When I only take 500 mg, it's just one pill in the morning. When I take a gram, sometimes I take them both in the morning, sometimes I divide the dose. For me, all of these variables have made no difference at all. I do have to pay close attention to my symptoms. There have been several occasions over the last year-and-a-half when I have had to slightly increase, slightly decrease, or even temporarily stop taking B1. When I hit the sweet spot, which seems to change over time, I feel really great. I'm currently taking a break for a week because my symptoms were showing up again. If I stop taking it for a few days or a week and feel better, then I restart at a lower dose. If I stop taking it for a few days and feel worse, then I increase my dose slightly.
Thanks Art, Violet and Willow. I think I benefit from 500mg. Will try the same dose for the next 15 days.
You're welcome, Jay. That dose should, at a bare minimum, very significantly (4 fold reduction) reduce the inflammatory cytokine IL-17. Due to IL-17's positioning in the inflammatory cascade, it also means that multiple inflammatory mediators below it will also likely be ameliorated. These include TNF-a, IL-1b, IL-6, IL-8 and associated inflammatory pathways, all of which are elevated in PD.
Less inflammation generally means reduced oxidative stress and this is all good when it comes to PwP.
Art
Cocarboxylase form of b1 -- would this be okay to use?
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