I think I want to switch my HwP to Benfotiamine from B1 HCL Mononitrate. My main reason is because I am wondering if he would see more benefit from the switch. I don't think his low dose B1 HCL mononitrate (25mg twice daily, 6 days a week) is helping a ton even though I think it is helping a little.
So if anyone has any input about your experience with HDT B1 vs Benfotiamine and how you switched I would really appreciate any information and thoughts that you care to share.
Thank you and have a fabulous day!!
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41. Can I use benfothiamine instead of thiamine hcl and still get the same results as thiamine hcl?
We don’t use benfothiamine because previous trials report it does not enter in the neural cells, that’s why it is not used for the diseases which don’t affect the Central Nervous System (Bettendorff L.). We administer thiamine cloridrate intramuscularly or oral thiamine hcl effectively.
Benfotiamine is a fat soluble form of thiamine whereas HCL and Mononitrate are both water soluble and the body tends to rid itself of excess amounts fairly quickly. I think that would be a problem if you required very high dose thiamine in order to get a good response. Benfotiamine at that high of a dosing (over a gram) could accumulate in the fat tissues.
The lowest dose I have seen of Benfotiamine is 100 mg. If he is only using 50 mg of mononitrate, 100 mg of Benfotiamine might be too much for him? If you think it might be better for him, try it, you can always go back.
Have you tried going higher than 50 mg per day of the thiamine mononitrate? If so, what happened? You've already seen the effects of thiamine hcl on him and you felt mononitrate was better for him.
I'm sorry...Jury? What jury? Who impaneled a jury, and composed of who? Why should my health suddenly be up to a "jury" or a bunch of strangers who have no interest in likely no knowledge to speak of about anything? Why is my health subject to some uninformed popularity contest?
"Your body might have a hard time absorbing thiamine. That’s where benfotiamine comes in. Benfotiamine, which turns into thiamine once it’s inside your body, may build up to helpful levels more easily."webmd.com/diabetes/benfotia...
I prefer natural over synthetic myself - but that's not what the OP asked. Maybe benfotiamine will work better than HDT, no way to know unless you try. shop.drberg.com/nerve-suppo...
Thank you Art. I didn't realize that benfothiamine was fat soluble. Higher doses of b1 mononitrate increase his anxiety.
His tremor has increased which means so has his anxiety so I am trying (again) to find relief for him. He "tolerates" his condition quite well and doesn't let it stop him from his daily activies, such as snow plowing and shoveling.
I did go ahead and order the viraball that others have discussed here on the forum so we'll give that a try.
Thank you again for your help and have a fabulous day!!
It’s a vibrating ball that some PwP’s find helpful in decreasing tremors. There is a Vilimball that, I believe comes from Lithuania. I haven’t gotten a hold of the company yet to see if they sell/ship to the US.
Here is a link to the viraball that Amazon has available.
But do your research. To my understanding the Vilimball website has a lot of information about it.
I just got an email from Dr. Mantas Venslauskas and they do ship to the US. From what I could figure out it is probably in the $400 range with shipping.
Well anxiety is considered a symptom and Dr. C said a dose that is too high can increase symptoms, so maybe he is at his max dose. I'm curious about when you tested at higher than 50 mg/day and his anxiety level started to rise, did any of his other symptoms improve along with the increase in anxiety?
Hello Art ~ It was July 2021 when I was able to figure out the dose of 50 mg 6 days a week. I had tried 1500 mg of B1 HCL down to 100 mg/day. All with increased anxiety and tremor.
In October his symptoms had greatly increased and I had a “discussion” with you and you reminded me of the need for the B1 holiday. (I had TOTALLY forgotten tgat!) He was better after the holiday, but he still has a new left hand tremor, with an increase in the anxiety even after the B1 holiday. His left foot tremor ~ I’m not sure if there is a change but I kind of think it too has increased.
I also want to make note that this summer, till October (due to change in weather), he was riding his e-bike over 100 miles per week. His exercise has decreased because of adverse weather. As soon as we figure out whether or not a weird pain that showed up is from his long bike rides or not we will invest in a “fun” stationary bike so maybe he can once again be going on 2- hour daily bike rides. With all that said ~ could his increase in symptoms be due to decreased exercise or should I start “experimenting”, again with his B1 dose ( maybe less than the 300 mg/ week)?
Thank you for your help, insights, information, and time to help me with this.
Starting with your first paragraph, you say he had increased anxiety and tremor all the way down to 100 mg/day. How do you know that 100 mg/day still wasn't too much for him. Those are two increased symptoms based on what you said and Dr. C said increased symptoms are an indication of overdose. Further, the reported effective dose range reported on this forum is 25mg to 4000+mg/day.
It doesn't sound like you ever found out that anything below 100 mg may have been his optimal dose or not, but with increased symptoms, the range below 100 mg of thiamine HCI should have been tested.
The fact that he currently has increased symptoms of tremor and anxiety and the fact that you saw an improvement after a holiday suggests his current dose is still too high. You also did not say how long a holiday he took?
His dose has been below 100 mg per day ~ 50 mg per day is what he has been on. I’m sorry that I was unclear.
I gave him a 9-day holiday. Started him back on 25 mg 2x daily.
4 days later added 25 mg more, total daily then was 75 mg.
My notes say decreased in tremor the first day of 75 mg. However, the next day tremors were very bad so skipped B1 this next day and tremors were again decreased. He skipped B1 for 7 days. 5th day of no B1 he noticed that his feet wanted to drag ( new symptom).
Then he started back on the 25 mg twice a day with skipping one day a week.
Maybe the 50 mg per day is still too much?
I hope I have been able to explain this in a clear manner.
The only problem is that I am confused which type of thiamine you are discussing each time. In theory, the mononitrate(TM) is significantly more bioavailable than the HCL.
So your 50 mg/day of mononitrate should be equivalent to a significantly higher dose of thiamine HCL (TH). What happens when you give him just 25 mg/day of TM? What happens when you give him 25 or 50 mg day of TH?
Clearly he is closer to the lower end of the effective range reported on this forum and even the 50 mg/day TM is causing him the increased symptoms that you described, making it sound like his 50/mg day dose is still too high.
Btw, you didn't answer the questions that I asked in my last reply?
I couldn’t find a low enough dose of the TH. His symptoms were always hugely increased.
I even had tried Daphne’s sublingual dosage and that was too much ~ increase in tremor and anxiety. It was only when I had accidentally stumbled on the low dose of mononitrate that he found some relief.
Is it common to need an even lower dose of B1 as time goes on?
Some forum members have reported that one dose has suited them well as long as they have been taking B1 while other forum members have reported needing to adjust downward over time or take holidays when symptoms seem to increase. Very individualized is how I would describe it, but as I said earlier, the lowest reported effective dose on this forum has been 25 mg/day of TH and one would assume the dose could be lower with TM since it is being used sublingually.
Just a thought, but maybe the reason that TH was never as effective as TM is because the dose was always too high, hence the increased symptoms and possibly the same for TM. A little testing should answer those considerations.
Thank you so much, Art, for helping me once again to try to figure out this challenging disease treatment. I once again have a new game plan.
And once again I want to thank you and let you know that I do appreciate you taking the time to communicate with me and help me figure this out. I hope that I too, can be of some help to others.
My own experience with B1 mononitrate is that 25mg every other day is what suits to me. I have been on B1 Hcl fore more than 4 years, and realized that i have been probably overdosing for all this time. I took a two weeks break and started on 50 mg/day and i quite recognised overdose symptoms quickly. Stoped a few days and restarted at 50 mg every other day. Clearly felt an improvment in symptoms and then got worse, overdosing again. Stoped for more 3 days and felt improvements again during one day. Restarted again at 25 mg every other day, and i can clearly see improvements in my walking, tremor, extended benefits from levodopa (more on time), and i had also to decreased levodopa, because i was getting some dyscnesia, which i didn't had since my FUS intervenction, 2 years ago.
Hello Markbit ~ Thank you so much for sharing your experience! After my discussion last night with Art I have decided to have my hwp take a 10 day holiday and start him on 25 mg/day. I will watch closely to see if that might even be too much.
This is such tricky business!! I appreciate your input.
Thank you!! I’m pretty sure I have that one in my arsenal. I just may give that one another try and cut it into quarters also. One more question, if you don’t mind, with all the chatter about sublingual, do you just swallow it or put it under your tongue sublingually?
Also of note “my” brand has quite a few more added ingredients than the Superior Source so that just might be a better choice anyway.
I put under the tongue, it dissolves very quickly, and i try to hold it as long as i can, usually 20 to 30 minutes, before swalow everything. and i don't eat or drink nothing in the next hour. to alow that everything that remains in the mouth can be absorved (i usualy taste my mouth a litle bitter during that time)
One more thing i forgot to mention, and probably is making a diference, i've added Magnesium L-Threonate (one capsule/day). in add to my nigari i was doing before, and started a B-complex (seems like that other B vitamins are essencial to B1 work properly)
Benfothiamine such as TTFT (a form of allithiamine) are synthetic derivatives of thiamine and are more bio available. This is not always good because it quickly leads to symptoms of excess, in my experience.
Then it would appear that they do other beneficial things but not primarily related to thiamin e non clear to me. Benfothiamine is considered to be both fat and water soluble but don't ask me why, as per photo.
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