I started taking B1 two weeks ago. I have been liaising with Dr constantini and he suggested I take 500mg daily. After 7 days of taking B1 I suddenly developed worsening on my tremor. On the advice of of Dr constantini I have suspended taking B1 for 7 days and will recommence with a lower dose. The day after I had stopped taking B1 I noticed that I had more on time with my medication. Following day the same then slightly less. Third day I started to decline again and my tremor has been very problematic to say the least!
I'm a bit confused as to how B1 works with levodopa and in general. The general wellbeing you feel at the start of taking dose is very misleading when it is followed by worsening of the condition. I'm assuming that when the wellness continues you have successfully found the right dosage. Also due to the nature of our condition I'm not sure that any worsening of my symptoms during the time of taking B1 at the beginning it's just a normal day in terms of fluctuations.
I've also read conflicting advice about what form of B1 how to take i.e. fat soluble versus water soluble. I ordered vitamin B1 originally from biovea but had to return it with after i read on this forum that it was as it could potentially cause kidney problems.
However i have noticed on this article that fat soluble B1 is recommended.
I will put a link at the end of my post which will answer most, if not all of your HDT questions.
How soon you reach a worsening of symptoms gives Dr. Costantini a clue about how high or how low your optimal dose is likely to be. The videos you send him also help him determine dose adjustments. The "Push Test" video that you send him helps him determine adjustments also. The fact that it took a week at 500 mg suggests that you will require a relatively low dose each day compared to others who require much more per day.
Dr. Costantini is the inventor of the HDT protocol and my best advice to you is to follow his suggestions on dosing and type of B-1 because he has more experience with it than probably anyone else in the world and definitely in comparison to any other neurologist. He also has the greatest experience with HDT in combination with all standard PD meds.
HDT is synergistic with levodopa and Dr. Costantini can work on your levodopa dose once the two of you have found your optimum HDT dose, but that is your main objective to find your optimum B-1 dose, stabilize and perform a good push test. Once those three objectives are met, then you and he can determine if any adjustment to your levodopa might be additive.
Another point is that it generally takes months to start to realize all of the benefits that HDT is likely to offer you.
Thanks Art all the links you have sent are much appreciated
Not sure if it answers my query regarding fat soluble v water soluble which is better? Also when do you judge whether you have worsening symptoms as mine seem to fluctuate all the time?
Thanks for this information very helpful and I’m not arguing with this but just intrigued in that if the body excretes the excess, as to why different people require different dose levels?
Your experience is similar to mine. I began with a 25 mg B1 injection at Dr. C's office which provoked increase in symptoms for approximately 15-20 minutes. After an hour I noticed the right hand tremor stopped and remained so the entire rest of the day!
Once home Dr.C. recommended B1 500 mg daily. This thiamine is free of all additives, prepared by a pharmacy here in Italy. Each time subsequent to taking B1 I became much worse. After stopping for a few days I was better!
Am now down to 50mg. per day and even at that dose symptoms increase!
I recently stopped B1 for 7 days as per Dr. C.
Tremors have decreased. Will await word from Dr. C. for new instructions.
That's very interesting to hear that you are experiencing a very similar reaction to B1 as me. I do hope that you have a positive response to the lower dose - please keep me posted.
I have just restarted on the lower dose of 200mg - i'll let you know how i get on.
I do hope that this works for us as living with an intense tremor is very difficult.
Your story is very interesting to me as I haven't seen anyone else who has required such a low dose and this makes you the record holder for lowest dose so far at 50 mg / day and still too much! Fortunately they do make 25 mg Thiamine HCL ez-melts if you have to go that low! I was not even aware these existed!
I guess you could even end up taking it every other or every third day. Please keep us posted on how Dr. C is able to resolve this! At 50 mg / day or less, do we even still call it HDT?
Yes, you, Biensur and Seashore60's friend are apparently very sensitive to B-1! This is an interesting development as the dosage rate on the forum overall seems to have been drifting downward over the past 8 months or so. Back then many assumed that 3 to 4 grams/day was the norm and none of us really knew any different at that time as we were barely establishing regular contact with Dr. C on the forum.
For me the great part to this is that apparently there are some PWPs, both present and future who may potentially be able to get by with just a 25 mg Thiamine HCL Ez-melt tablet under the tongue a day! How easy and convenient is that?
The sad part for me is that some of the people who failed on HDT may have been similar to the three of you, but because they were not in touch with Dr. C and not aware that some people may require so little B-1, they believe it does not work for them. Hopefully some of them will see your posts and decide to give it another try! There is so much to potentially gain and so little to lose.
I am thankful to all of you who update and report your results here on the forum because you never know who may read your post and benefit from it!!! The knowledge base on this forum is incredible and grows by the day....this is a great place!
Instead of HDT we'll have to call it HRDAT (Higher than the Recommended Dietary Allowance Thiamine). The National Institutes of Health puts the RDA for Thiamine at 1.2 mg for males 14-51+ years and 1.1 mg for females 19- 52+ years.
I, too am grateful for the generosity of those who share their knowledge and experiences. This forum is an incredible place!
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B1 Testimony
Dosing Information On HDT / B1 / Thiamine HCL / HCI For New Members Considering HDT Including a Link To Some of Dr. Costantini's Info
B1 experience so far!
Increasing my dose of B1 after 4 years and 7 months
High Dose Thiamine and 'Refeeding Syndrome' -- what if the concept of finding the correct dosage is wrong?
