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Parkinson's Movement
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B1 dosage advice

I’m trying to find my ideal vitamin B1 dosage and hoping someone who has experienced similar can offer some insight.

I usually take my B1 at 6 AM breakfast (500mg 1x per day) and generally have been feeling pretty good in the morning. But then around noon I feel like things start to decline a bit. Stiffness and foot cramping (my two main symptoms) returns. I can’t decide which is the correct conclusion to make:

1. The dosage I have taken in the morning has started to wear off, and I need an afternoon dose.

2. The dosage I took in the morning is too high, and I’m just starting to feel the affects of that.

Anyone experience something similar?

57 Replies
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If you were to add a noon dose, won't that answer your question? Thiamine doesn't normally hurt people at the doses used for HDT. The really important part is that you appear to respond!

Art

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That’s a fantastic reply Easilly and reassuring for me. Thanks very much, We are the same position really as my sister had just been recommended a dose change when Dr C’s support unfortunately was with drawn. With his recommendation of reducing my sisters dose , she had more of less had instant increase in legethergy and inner restlessness, so we are now trialling a slightly higher dose.

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Beanie57,

How long did Dr. C have you stop B-1 for , before restarting at the new lower dose and did you do it?

Art

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Hi Easilly. I was the person who sent you those videos! Dr C never mentioned stopping and then restarting. He just told us to reduce. As you said at the time not what he normally advises but she was not good at all with the lower dose. My understanding is no break needed if increase the dose so we are now trying 750mg ( 500mg am , 250 mg lunchtime).

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Okay, good to know. Please keep us posted on your sister.

Art

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IMHO and in my experience Thiamine in pills has a broad curve that goes beyond the day and takes a few days to months to benefit and slowly declines the same way for those who respond well. The ldopa no, after 3 and a half hours the effect is over and the symptoms return.

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That's what I noticed. You have a few days of grace.

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yOU MEAN after people feel the benefit of HDT and then it decline? benefit doesn't stay at that level?

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Hi TL500

I wanted to say that in my opinion it takes some days or months before the b1 gives benefits since you start taking it, and it takes days for the benefits to cease because you stop taking it. While for the levodopa this cycle lasts three and a half hours if all goes well. I am three years old that I take it and I feel good, beyond the highs and lows due to the cold, fatigue problems on the work, protein diet sometimes inadequate to L dopa, my general neurological picture has not changed much. My datscan of 2015 showed a large / average lesion of dopamergic cells with a difference between right and left for this in addition to the b1 I also use L dopa. I still work full time as a florist, and I'm a bit stiff in the morning and at the end of the dose of ldopa, but I'm never tired as before, the tremor sometimes comes back when I'm overwhelmed by work or if someone hits me, but then passes. I have a bit of hyperacidity that affects my mood is the symptoms of PD, but I love good Italian food. Life is a beautiful game that involves action with the consequence that you can win, but also the possibility of losing. Being a spectator does not amuse me, even if it is less "stressful".

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Thanks Giocas for your reply. so you are on 3 years Ldopa or B1?

And do you mean B1 helps that you brain scan hasn't change much (no progression in PD)?

How do you take B1?

Can we take it near Ldopa or other supplements?

Thanks

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No, TL500, sorry

1. Three year on b1 and also ldopa because my brain injury is big, so I need also Ldopa.

2. the datscan shows the brain injury at the time of diagnosis (September 2015), to see the progression we need to do another at least five years later and compare it to the first, I not have the second. Even so it may not be valid since an examination with a gross precision.

3. Injection with dr C prescription.

4.It would be good to learn, study and gain some knowledge before taking supplements, medicines and even vitamins to make the most appropriate and effective use. I know sometimes it seems difficult but for this there are sites like this where you can ask questions and have some reference that clarifies the doubts.

Here some link for everyone want know about:

healthunlocked.com/thiamine

healthunlocked.com/vitamin-b1

Here is an explanation of how Ldopa moves and acts in the body, in addition to saying other things that are perhaps interesting.

researchgate.net/publicatio...'s_Disease

Thank to Wriga for this.

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Thanks GioCas

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TL500,

That should only happen when the dose is not yet correct. The symptoms can go up and down, but once the dose is correct, the benefit should remain. If the dose is too high symptoms can worsen to a level that is worse than when you start HDT, but this worsening has always proven to be temporary and once the correct dose is found, the benefits remain.

Art

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Thanks Art.

So when one reached the right dose B1, can stay like that dose forever?

And no side effect? eg. load on liver?

Please also give me answers to the other previous questions.

Thanks!

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Generally, that is correct, but there have been cases with oral dosing where there may be one point after a year or so of being on HDT where some people have noticed a worsening of symptoms after being stable for many months and a very minor dose adjustment puts them back on track. One forum member in particular comes to mind, Kia17, who after approximately a year and a half of being very stable with very good symptom relief on HDT, noticed a sudden worsening of symptoms and Dr. C asked him to skip just one day of dosing per week and that resolved his worsening of symptoms and put him right back on the good track again. That should give everyone a good idea of how important the correct dose can be for some people when it comes to HDT.

I have a theory on why that can happen, but it is only theory and unproven. Thiamine acts as an antioxidant and it seems that it can at least partially have positive effects on the gut based on reports from HDT users and testers who have reported relief from years of constipation once starting HDT. Thiamine is produced in a healthy gut through normal bacterial action. If it is actually improving the gut, that means that the gut could potentially start to generate a small amount of thiamine again as this process appears to be shunted in PWPs. Would that slight increase in thiamine production due to an improved gut environment be enough to alter what has been a consistently effective HDT dose? Maybe when you consider how small the adjustment in dose that Kia had to make to get back on track, the elimination of one daily dose per week was all it took. I'm sure there could be other reasons, this is just my theory on why it may happen, but it seems fairly rare.

As far as side effects, no liver issues have been reported here or in Italy and generally speaking, side effects have been mentioned right away after starting, but I have not heard of any reports after months or years of being on HDT.

Art

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Thanks Art. It's even better that like in Kia's case not increasing HDT dose but reducing, which is positive "side effect".

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Art

Thank you for all these.

Kia

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Kia,

This makes me think of a question for you regarding that last dose adjustment due to the temporary worsening of symptoms. If I remember correctly, just a month or two before you had the worsening of symptoms, you were testing synbiotics with additional prebiotics in the form of mannitol and I was thinking that maybe that testing of synbiotics with your extra prebiotic intake may have contributed to improved gut biome parameters and possibly slightly increased natural thiamine production in the gut which may have ultimately lead to your slight overdose situation with thiamine? Does that time frame sound close enough to make this plausible to you?

Art

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Art,

I didnot take much of that probiotics. Just for a week or so.I guess because of my diet which is very low carbs, Butyrate producing foods and daily Intermittent fasting my needs to Thiamine had decreased and started to show worsening of symptoms and like you said with taking only a day off in a week it returned to normal. I am still takeing Mannitol.

Kia

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Hi Kia, what is butyrate producing food?

And what is Mannitol?

Thanks

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Hi TL 500

Butter- ghee

Mannitol from Blackburn distributions UK

Kia

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Sorry Kia, can you tell me what is Mannitol and

what do butyrate and Mannitol do?

Are they natural food?

Thanks.

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TL500,

The following link may answer some of your questions regarding mannitol and butyrate :

healthunlocked.com/parkinso...

Art

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Thanks Art.

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Thanks Kia17. Good info.

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Hi Kia! Do you think we should take Butyrate supplements ? I know there are food sources but to be sure we are getting enough should we also use supplements ? Thank you !!😊 great articles!!

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Hi Connie, I donot think taking supplements for Butyrate is a good move while we can get it from natural foods. IMHO.

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Thank you Kia! Hope you are doing well!

Connie

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And you Connie

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Hi Art, how long are you on HDT?

how much per day?

what symptoms you have relief?

How far apart should we take it from Kinson and supplements?

Thanks

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TL500,

I have posted on multiple occasions on this forum that I do not have PD, but it could be very easy to miss those posts with the shear volume of posts that go through this forum each day.

Even though I do not have PD, I have taken HDT from 100 mg per day up to 4 grams per day for months because I wanted to see how I would react to it and to be familiar with it since I talk about HDT. I do not currently take it.

Regarding timing of HDT dosing, Dr. Costantini has said from the beginning that it is compatible with standard PD meds and can be taken at the same time as the meds.

In terms of compatibility with other supplements, I am not aware of any reports of problems with that on this forum.

Art

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Sorry Art I didn't know that. It's nice of you to be here to help us with HDT questions. Thanks for your answers.

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Hi Art, I wanted to ask Dr C. but at the moment can't.

Would you be able to tell me this: My daughter is 22 Years old with cerebral palsy. She uses walker and wheelchair, has dystonia, talks & eat normal.

Looking at B1 deficiency, I feel a few things sound like her, and in the Q & A it mentioned that Dr. C. uses B1 to treat dystonia too(?). Her eyes flicker, I think it's called Nystagmus, I have Pd and sometimes my eyes move like that too. She has dystonia (me too.), and maybe some other things mentioned in B1 deficiency.

I want to give her B1 100mg but a bit scared if I overload her with something her body doesn't need.

What do you think please? Thanks.

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TL500, here a article on dystonia, deep down in the references you can find many others that you could show your doctors and get advice from them.

oatext.com/Thiamine-and-dys...

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It's a mazing GioCas! Thanks !

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Hi Giocas, I have 100mg capsules. We can't get injection in Australia if no deficiency, I think. Do you know somewhere how much I can give her?

Recently she has been diagnosed with osteoporosis too. I don't know what to do!

Thanks.

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I have never seen where Dr. C has tested B-1 for cerebral palsy (CP) and I don't see any useful studies that used B-1 to effectively treat CP or its symptoms. Dr. C has discussed HDT and dystonia, but that discussion was in relationship to PD and I have never heard him discuss dystonia in relation to CP, so I don't think you can draw any meaningful conclusions regarding CP and B-1 from his comments. Vitamin B-1 has an excellent safety profile and I don't think I've heard of any forum members who had a problem at 100 mg per day, but you can ask her doctor about it to be sure that it does not conflict with any of her current medications. You might do some reading on deficiencies in CP as you will see that B vitamins in general are low in the majority of people with CP.

I am not a doctor so I can't recommend any type of treatment for CP or anything else. I can recommend that you read about magnesium as it relates to CP. Topical magnesium chloride oil and epsom salt baths are generally considered to be helpful for certain CP related symptoms so that may be worthwhile reading. In general the topical magnesium spray offer some pain relief as well as some muscle relaxing effects. Epsom salt baths are useful in these two respects also. I have read where some people use lavender essential oil drops in epsom salt baths to add to the relaxing effect and the lavender oil can be added to the magnesium spray also, but I have not used the lavender oil in an epsom salt bath before. Constipation is also common in CP and some oral forms of magnesium such as magnesium oxide and magnesium citrate can be useful for that purpose. Magnesium is known to be low in people with CP so again worth discussing with her doctor. I would also recommend reading about melatonin as it is considered to be brain protective and here is a study or two to help you get started with that reading on melatonin. :

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pubmed/258...

ncbi.nlm.nih.gov/pubmed/299...

Given that vitamin d is known to have global effects in humans and is frequently low or insufficient in CP, it will be worth discussing with her doctor the possibility of pushing her 25 OH d serum level toward the upper end of the reference range of 30~100 ng / ml.

Read up on essential oils and combinations as they are mentioned frequently on the web as useful by people with CP.

Vitamin A is also frequently low or deficient in CP so having her doctor test and correct any deficiency is worth considering.

Since osteoporosis is common in CP and can create pain also, it will be worth talking to her doctor about the supplements such as K-2, D-3, magnesium, boron, calcium and silicon in order to be proactive in trying to prevent osteoporosis and all of the problems it can bring with it.

Here is a very short abstract that discusses vitamin K-2 as it relates to osteoporosis in people with CP.

ncbi.nlm.nih.gov/pubmed/286...

There is neuroinflammation involved in CP and fish oil (EPA/DHA) of high quality has shown itself to fight neuroinflammation and as such is another one worth discussing with her doctor. The fish oil and melatonin may work well together.

That should generate plenty of reading material for you!

Art

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Thanks Art. alot for me to take in, but very helpful and informative.

Dr. C. info didn't mention about PC, but B1 also for dystonia.

I don't know if the dr here, Australia, will agree on dose of 100mg B1 as the Daily Reccommendation is about up to few mg?

and don't know if they do all these blood test, as previously I asked for B1 test for me but they don't have it. They only tested B12 and it was fine, but my Naturalpath said not a good level so she gets me to take B12 sublingual.

And like Dr Carolyn Dean said normal bloodtest for Magnesium don't show "real" deficiency.

My daughter recently had an xray for the feet, Osteopath just wanted to check, result says there's demineralisation.

i don't know what to do.

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Probably easier to concentrate on one thing at a time. You are trying to get yourself straightened away at the same time you are trying to help your daughter and it sounds like you are overwhelming yourself.

The demineralization in her foot is consistent with osteoporosis being common in CP and the supplements I mentioned above should be agreeable with her doctor. Dealing with that early may save her from multiple problems in the future. As far as blood testing, it is already established which vitamins and minerals are low or deficient in CP and I named many of them in my previous post, but I don't understand how they can't test for what are known deficiencies in CP???

Regarding your B-1 test, Dr.C routinely does that testing in his patients and he has said quite clearly that most of his patients show in range B-1 tests prior to HDT and those levels are off the chart once HDT is begun, so I'm not sure what you are hoping to find by having that test done. If you are hoping that your doctor is going to approve of HDT, if the experiences mentioned on this forum are an indication, you are likely to be disappointed on that point.

It sounds like if your daughter's doctor is not helping her, you might consider taking her to your naturalpath !

Art

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Hi Art, Same question to Giocas. I have 100mg capsules. We can't get injection in Australia if no deficiency, I think. Do you know somewhere how much I can give her?

Recently she has been diagnosed with osteoporosis too. I don't know what to do!

Thanks.

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TL500,

I answered these questions in my previous replies to you above.

Art

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Thanks Art.

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I called my friend who is expert at muscle testing and got the dosage: 4(500 mlg) in morn and 4 tablets in evening. I'll let you know how it works out.

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I starter taking Thiamine the first of the year. I purchased Thiamin Hydrocloride, 300MG capsules, 100 capsules per bottle, GNC on Amazon for $14.99. At Dr. C's recommendation I started with 2 capsules morning, and another 2 capsules evening for a daily dosage of 1200MG. At the end of my first month I had noticeably better balance especially when in an off period like just waking up. Freezing was almost nonexistent, and my girlfriend said I was smiling more. I also experienced NO adverse side effects. At that point, and with Dr. C taking care of personal matters, I decided to bump it up ever so slightly. I am now taking 3 capsules morning and 3 more evening for a daily dosage of 1800MG. My body continues to gain flexibility, range of motion, and fluidity. My mood has also improved. Things are looking up.

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SCT25,

That is awesome news, congratulations! Please keep us posted on how you do with your HDT testing!

Can you or I add your post to the thread where people are posting their HDT results and updates at this link below? The thread is long an can take up to 20 seconds to load, so give it a moment to load. The thread is heavily followed so it will maximize the exposure of your post and will make it easy for you to reply to your original post if you want to update it and that will keep your HDT results in chronological order and make it easier for people to follow your progress. If "you" add your post, your icon will appear next to your post and make it easier for you to find at a later date, but if I copy and paste, my icon will appear next to your post making it harder for you to find it to update it when you want.

Thank you!

healthunlocked.com/parkinso...

Art

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Easilly - Is there a way to navigate directly to the end of the "Who's taking thiamin" thread?

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I grab the small darker square or rectangle in the column on the far right of my screen wth my mouse and drag it to the bottom of the page. It gets me to the bottom of the thread in about two seconds.

Art

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I think I finally was able to add my HDT results to the thread. Thanks.

Steve

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SCT25

I just got the notification that you posted to the thread and I went and read it!

Thank you!

The thread is quite large, but it has a lot of information on the results that the forum members have gotten from HDT which is useful for people who want an idea of reasonable expectations with HDT. Here is a link to an almost complete list of every symptom (80) relief that they have reported :

healthunlocked.com/parkinso...

If you are ever looking for HDT specific posts that I have put up on the forum, just click on my icon and you will see a short list of such.

Art

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Thanks for sharing. My husband also takes the GNC B1s-300 mgs. How much do you weigh& how tall are you? My husband has lost weight & I wonder if dosage needs to change. Have not yet found magic number. He’s on 1500mgs

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Vawomann - I am 5'11", and currently weigh 186lbs.

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SCT25,

That is great! please keep us posted.

Thanks.

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I take 2000mg in four doses, each dose 1 x 500mg capsule, 6am, 10/11, 1.30 pm and 6 pm. This suits me well

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Yes I found that 500mg was to much and I felt like I had to much coffee so I stoped taking it , I'm wondering if you like me have had the Dbs surgery become I found no amount of b1 helped.

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Would there be any harm in first trying a lower dose in the morning to see if it might last longer?

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I would try another 500 mg at noon

As recommended to me from Dr Constantini I do 2 x a day I does find it helps

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