I have decided to make this post as a general guide to explain to new HU forum members how Dr. Costantini tried to determine the correct B1 dose for each of his patients via email. By doing this, one need only click on my icon to find it among the 14 posts that I have and this way, I won't have to write it again when anyone asks about HDT dosing.
My hope is that this page will answer almost every question, for people considering B1, about HDT/B1 supplementing.
On this forum, members have found effective daily dosing as low as 25 mg/day or as high as 5,500 mg / 5.5 grams per day, but the majority are well below 4,000 mg/day.
Dr. C would start his email patients at 4 grams in two divided doses per day, half the dose at breakfast and the other half at lunch with or without food in the beginning. At the beginning of first treating his patients by email it was 4 grams for everyone, but later he began starting them at lower dosing once he realized that 4 grams was too much for most people and people who weighed less and or had minimal symptoms. He still tried to start them on the high side in order to see if he could elicit a faster response, so in a case of a patient who weighed 150 pounds, he might start them at 2,000 mg or 3,000 mg and have them report back to him regularly how they were doing.
If there was a noted improvement, but then the improvement was followed by a loss of the new improvement and possibly a worsening of symptoms to as much as worse than ever before, he would have them stop B1 for 3 to 5 days and have them take meticulous notes during this time without B1. Dr. Costantini said that in his many years of experience with HDT, any new symptoms or worsening of symptoms that were brought on by too much B1, were only temporary and were soon resolved once the dose was lowered appropriately. He almost always used a 3 to 5 day break from B1 before restarting at a new dose.
What he was looking for was to see how quickly you lost the increased symptoms and how long it took you to return to your base starting condition. He also required that his patients take videos at regular intervals of themselves doing common things like walking, talking, writing, going up and down stairs putting socks and shoes on etc. He only required short videos because he was very adept at determining the overall condition of the patient and these videos helped him determine any changes that might be attributable to B1. He only required a 1 to 3 minute video, but I suggest taking longer 5 minute videos to make it easier for a lay person to determine changes from baseline, easily.
After the patient had stopped B1, the worsened symptoms had gone away and 3 to 5 days had passed, he would restart his patient at, often times, half the dose they had been taking, but this could vary for each individual. For example, if you lost the increased symptoms very quickly such as by the next morning after stopping B1, that would tell him that the original dose was close, but a bit on the high side and in such a case he might only take the patient down to 2,500 mg or 2,000 mg instead of 1,500 mg (half) from the original 3,000 mg. On the other hand, if it took a full five days to get back to your pre B1 symptom level, that was an indication that the dose was significantly too high in which case he would halve the dose from 3,000 mg to 1500 mg.
It should be mentioned here that Dr. Costantini also required a regular video of the push/pull test as part of his patient requirements. The pull test helped him to determine an optimal dose. A good pull test in conjunction with significantly reduced symptoms was his way of determining when the B1 dose was optimized. Being a neurologist, he might also try and optimize the levodopa dose at this point also if the patient was already using levodopa. He encouraged patients to use both levodopa and B1 as the best chance to minimize motor symptoms, but some on this forum have achieved good results by using the herb, Mucuna Pruriens in place of levodopa, but that is another topic all by itself. Here is a link to the pull test of a person with a poor response as performed by Dr. Costantini:
I am only giving this information as a general guide to how Dr. Costantini was determining dosing of B1 for his patients. This is not a specific dosing method for anyone, just a general idea of Dr. Costantini's dosing methodology.
If you are one of the lucky ones that respond to B1, I would like to point out that Dr. Costantini felt that once you found your correct dose, that dose should be good for quite awhile, but he also found that in the 6 month to 18th month of HDT use, it may be required to take a short vacation from B1 and or reduce the dose very slightly. You will find that many members have adopted this thinking into their B1 regimen. Some take a brief break from B1 if they find their symptoms worsening and then get back on B1 with no change in dose, once their worsening of symptoms have subsided, while others take a break from B1 until the increased symptoms depart and then resume at the same dose, but reduce the dose slightly by taking one day of the week (the same day each week) off from B1. As you can see, dosing B1 can be very individualized and there is not and has never been one method or dose that fits everyone. The fact that the reported effective dosing reported on this forum is 25mg to over 4000 mg per day is a testament to the fact that one dose does not fit all.
Lastly, it should be made clear that although the majority of patients respond to HDT, there are some who simply do not respond to B1 and there are some who take up to 7 months to finally respond to B1. Dr. Costantini felt that even a bad response meant that you could also be a positive B1 responder, but on that point, I am not clear because there is not enough feedback on this HU forum to verify that point.
Here is an organized link to all of the information that Dr. Costantini left with us on this forum :
IN MEMORY OF DR. ANTONIO COSTANTINI, A GREAT AND CARING HUMAN BEING WHO PUT HIS PATIENTS FIRST AND DID HIS BEST TO MAKE THEIR LIVES BETTER! HE GAVE TIRELESSLY FOR HIS PATIENTS AND HE IS DEFINITELY MISSED. THANK YOU FOR HELPING MAKE THE WORLD BETTER!
TILL WE MEET AGAIN MY FRIEND!
Art
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chartist
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This is a copy and paste of a reply by forum member M-o-ggy on 10/7/2020 who is using the highest known dose on this forum :
M-o-ggy
57 minutes ago
Hi there
I have been taking 4 gram of B1 for 12 months. About 3 weeks ago I decided to take a multivitamin as well. After about 3 days I felt much better I also realised that this supplement had a high dose of B1 in it and reduced my tablets to adjust the dose.
When I did this I did not feel as strong so as an experiment I reinstated my B1 tablets and felt better again.
I now take 5.5 gram of B1 a day.
I am now in a position where I occasionally decide not to take the multi vitamin.
Overall I am better. My tongue works better, I chew my food more easily, I sit up when I am eating, I am not so afraid that the food will fall off my fork, I am cooking simple meals again, I don’t dribble when lying down , I can say multisyllabic words, My swallow seems better, I am eating rice again, My balance is better.
Downside is that I have increased numbness in my left leg. This sometimes also happens to my left arm and left side of the face. Sometimes it is a very strong feeling and other times I am hardly aware of it. It is a good indicator of how nervous I feel. I have also started having short sharp pains in my head - I don’t know what all that is about.
Hi Art, i been on 125mg x2 per day... felt more energetic the 1st 6th days but felt more rigidity today ... think will stop b1 for next few days again... Will half the dose after a week
That's generally what Dr. C would do. Feeling more energetic is a common first notice of B1 users on this forum. Less fatigue and a clearing of brain fog is also common. A friend of mine noticed greatly reduced anxiety as his first symptom improvement followed by a feeling of greater stability. Here is a link to different symptom relief that members have reported on this forum :
A very timely and helpful post. I was one that asked for lower dose and split dose early on. Dr. C deserves an award for his efforts helping so many with nothing asked for in return.
About 3 months ago, I had dinner with a few friends, one of which, his mother has PD. I hadn't seen him or his mother in years and he let me know that his mother's PD had advanced very significantly and so she was not able to come with him to visit.
Another of my friends who has PD who I had told about HDT/B1 had purchased 2 of the large Vitacost bottles of B1 but had only used about 50 capsules out of the first bottle and gave them to me because he said they didn't help him! I looked at the open bottle and it looked close to full, so I asked his wife how long he had taken the B-1 and she said he didn't really try them for more than a few days. I told them both they should use up the two bottles in order to give B1 a reasonable chance to work. My friend was not open to trying more so I took the bottles reluctantly, but his wife told me he was too lazy to take the pills and I should go ahead and just take them and give them to someone who will use them so they don't go to waste. So I took those 2 bottles and gave them to my other friend to give to his mom as he told me she had gotten really bad over the past 2 years. He told me he would give them to her since he is essentially her caregiver and he would try almost anything to help her.
I talked to my friend today and he said that the B1 had really made a difference in his mom and he was going to keep giving them to her. He was in a rush and could not tell me much, but he said the difference was really noticeable and he was glad I had given him those two bottles because he was going to give B1 to her indefinitely.
From what he had told me previously, I knew that his mother was advancing very quickly, so I was very happy to hear this news from him about his mom. She is a very nice lady and it made me feel good to know that those pills that my other friends gave to me were put to good use!!! So I just wanted to share this story with the forum!
The thought occurred to me that Dr. Costantini wanted his patients to take videos of common things such as walking, going up and down stairs, talking, pull test, writing etc. for the purpose of him being able to evaluate how you were doing before B1 and after different periods of time after starting B1 because he felt that many people who improved slowly were not aware that they had improved or how much they had improved and he felt that the videos offered the visual proof of improvement or lack of improvement. I previously had suggested that it was probably a good idea to make these videos longer than his one or two minute recommendations so that the lay person would be able to easier discern changes over time and I still feel that way about B1, but now, I also feel it is a good idea to do these videos no matter what you are about to test to keep a good visual chronological record of how you are now before starting a new regimen, supplement or medications so that visual changes will be apparent to you and your neurologist or movement disorder specialist.
Initially I did not believe in the HDT therapy but now I'm in the 5th year and the single symptom I have is a mild tremor in the RH; I take 3x100 c/l a day.
Can I say it slowed the progression?
I do not know for sure but I'm inclined to think so.
What I think is interesting is that I have asked on several occasions if members who are taking B1 would stop for a short period of time to try to confirm what if anything B1 is doing for them since Dr. C. always said that once they resume HDT, they will regain whatever benefit that it is offering the patient. No one ever offered to stop B1 and instead they would rather keep taking it uninterrupted, even when they were not certain it was helping.
Regarding progression, it sounds like you are seeing what Dr. C. said he saw in his patients over a 6 to 7 year period, little to no progression, but some have reported progression, so it is somewhat confusing and so far insufficient data to claim that everybody will respond the same in terms of progression.
Congratulations to you ion_ion on doing very well on B1 over the past 5 years!
That is very useful information, thank you very much for sharing! That's the longest I ever heard of someone stopping HDT for. Previously I only heard about that through Dr. C's accountings of what his patients had done and if I remember correctly, I thought he had mentioned 3 months as the max. Good to know it could be a bit more in some people.
It was thought and mentioned on this forum many times that Thiamine Mononitrate (TM) is fat soluble and therefore not suitable for long term use at high dose as might be the case for PD. As fat soluble supplements such as vitamin D might build up in the fat cells, it was thought that such potential might prove unhealthful in the long run. As it turns out, TM is water soluble, just like Thiamine Hydrochloride (HCI) and, in some people, it may actually work better than Thiamine HCI!
Here is a copy and paste of a recent post back and forth between forum member Lizzy9 and myself that suggests that Thiamine Mononitrate has similar effects to Thiamine HCI and in some people it may actually work significantly better as Gail attests to in her husbands usage of TM! I'm adding these comments to this thread because I believe them to be important and possibly useful to others!
Lizzy9 profile imageLizzy9 in reply to chartist
17 days ago
Hello Art ~ Thank you for the new information. My husband is on 25 mg B1 4 days a week and 12.5 mg sublingual 2 days, taking Sundays off. We have tried higher doses which increases his anxiety levels and tremor so we have settled on this. He did have the best outcome on 100 mg of B1 Mononitrate which I had accidentally purchased. I have wondered about going back to that type but it is the wrong one. He does get 110 mg B1 HCL in his B complex. So I guess he’s kind of close to the 200 mg/ day. I wonder if I could VERY slowly increase his B1, kind of sneak it in so maybe his body wouldn’t realize what was happening and then not get so wound up about it?Any thoughts? After reading this information I would really like to get him up to the 200 mg dose.
Thank you for help and input!!
Have a fabulous day!!!
chartist profile imagechartist in reply to Lizzy9
17 days ago
Hi Lizzy,
Somebody on the forum mentioned that B1 mononitrate should work also as the previous thought on the forum was that it was fat soluble and might get stored to levels that may be too high, but apparently that was not correct as outlined on this NIH page regarding thiamine.
>>> ' The most commonly used forms of thiamin in supplements are thiamin mononitrate and thiamin hydrochloride, which are stable and water soluble [1,12]. '<<<
One thing to keep in mind is that Dr. Costantini had to choose the form of thiamine that he thought the majority of his patients would be able to get, since he had patients around the world , without too much problem and Thiamine HCI/HCL seems like the easiest to get.
Art
Lizzy9 profile imageLizzy9 in reply to chartist
17 days ago
This is FABULOUS news!!! And the article says it is one of the most common B1’s along with the hydrochloride!! I cannot thank you enough. I will get him back on the B1 Mononitrate, then!!
Thank you!! Thank you!!!
Have a fabulous day!!!
Lizzy9 profile imageLizzy9 in reply to chartist
1 day ago
Hello Art ~ You had a "conversation" with me 2-3 weeks ago and helped me tremendously and also asked that I update you on our progress. (I have no idea where that "thread" is.)
Here is the update on our B1 journey ~ Started B1 Mononitrate 25 mg 2 times a day, 11 days ago ~
As of yesterday ~
My husband is laughing more and joking around more like he used to.
He talks more.
Anxiety is extremely minimal to non existent.
Tremor has decreased but not totally resolved.
He doesn't complain of "feeling like something isn't right in his head".
He can drive for a couple of hours without anxiety and the "terrible" feeling in his tremor foot, the foot still will tremor but he but he doesn't need his wooden "foot roller" to be able to tolerate the driving.
He isn't needing me to massage his tremor foot as often as he did pre-B1 Mononitrate.
Two days ago we drove 2 hours to purchase e-bikes to help with our exercise routine and the drive went well even though he was driving our manual transmission pickup in stop and go traffic of the larger city.
All in all I am so thankful for your help!!! There are no words, really to thank you enough.
Also, I took your advice and we added Melatonin to his stack of supplements. His current dose is 46 mg with no ill effects. My question is ~ How do I know when we have reached a good dose for him?
Again thank you for your help and time and have a fabulous day ~
Gail
ion_ion profile imageion_ion in reply to Lizzy9
1 day ago
Usually people use B1 HCL which is different from that you use. But, if it helps your husband that's what is matter.
Lizzy9 profile imageLizzy9 in reply to ion_ion
1 day ago
He was miserable on the HCL ~ I am thankful for another option and the help of finding that option!! I agree ~ if it helps that's what matters. Thank you!
chartist profile imagechartist in reply to Lizzy9
21 hours ago
Gail,
It is so wonderful to hear how much your husband improved after switching to Thiamine Mononitrate from Thiamine HCI!!! You just never know how such a small change can make such a significant difference!
Thank you very much for coming back and updating the forum as there are likely others who are currently using Thiamine HCI who may also see such extra improvement in symptoms by switching to Thiamine Mononitrate. We are all different, so of course it is not likely to be the same for everybody, but because you and your husband were willing to "test the waters", we now have another option to Thiamine HCI! Thank you again, Gail!
Art
Lizzy9 profile imageLizzy9 in reply to chartist
20 hours ago
That is my hope ~ that our experience may help others!
Again, it wouldn’t have happened without your help.
very thankful to you all. can’t wait for my husband to try B1. I wonder if it’s necessary to wait to discuss with his neurologist appointment on 6/ 22/23. I’ll just be patient
Do you do private consultations? I just never seem to get going with this one. And I am a bit put off that core "sound pwp members", either can't get it working, or plug away "just in case", with no clearly identified benefit (mainly for the dubious progression inhibiting benefit) - so it's apparantly not just me
I've never done private consultations on this forum, just suggestions on the forum and in chat.
I understand what you are saying though and that is where Dr. Costantini was so hoping that someone would end up doing a study on B1 and PD.
My personal opinion on B1, whether you believe in it or not is that it is definitely worth consideration in PD, if for no other reason than its ability to potently inhibit IL-17, which is activated and at elevated levels in PD. IL-17 is higher in the inflammatory cascade than IL-8 and reducing it should reduce other cytokines below it in the inflammatory cascade which should help quell the chronic low grade inflammation associated with PD. All of these inflammatory mediators also increase oxidative stress and feed off of each other in that anti- health cycle of inflammation/oxidative stress that helps drive the disease process and progression. Normal IL-17 levels are undetectable or close to it and that is worth working toward.
The $6000+ a month drug Secukinumab/Cosentyx targets and binds IL-17 and in the following article, it is suggested that this inhibition of IL-17 may prevent PD associated neurodegeneration by Cosentyx.
parkinsonsnewstoday.com/201...
Another consideration is that IL-17 is active in dysbiosis in the gut. Thiamine is a potent inhibitor of IL-17, but it is thought that the natural production of Thiamine in the gut is impaired by dysbiosis. This is why I have included B1 in my current regimen. B1 deficiency in the brain is neuroinflammatory. I am not aware of any simple tests to check thiamine levels in the brain and serum levels are not useful for determining tissue levels of B1.
Thiamine has many uses in the body and being replete makes the body operate much better. Thiamine is involved in so many things in the body, I imagine this is one reason why Dr. Lonsdale devoted so much of his time to studying B1.
Oh, there is the thought that thiamine may help prevent dementia also.
"With carbidopa in the system, the negative effect of pyridoxine on levodopa does not occur and there is no concern in taking vitamin B6 supplementation. People who are taking levodopa-only should avoid vitamin B6.
This is wrong: "With carbidopa in the system, the negative effect of pyridoxine on levodopa does not occur". What prompted my post, referenced above, was my personal observation that taking B6 along with carbidopa levodopa inactivated it.
As to this statement: "Pyridoxine (vitamin B6) may inhibit the activity of levodopa", [Emphasis added] I took a look and did not see any primary references confirming it. Primary references that I saw addressing this issue referred carbidopa/levodopa rather than levodopa only. It is my personal experience that taking vitamin B6 at a separate time from C/L avoids undesirable interactions.
Furthermore supplementing B6, as P5P and not pyridoxine, is a necessity for those taking C/L. For example, onlinelibrary.wiley.com/doi... "Pyridoxine deficiency and hyperhomocysteinemia are dependent on the daily levodopa/carbidopa dose,...Neuropathy is very frequent in advanced IPD"
No worries - I did not take your reply as questioning. I just felt it appropriate to be thorough since one would expect the referenced website to be correct in such matters.
I have a question about Superior Source brand of B1. They are microlingual tablets, 100 mg each. Is this the same as sublingual? If it's a good choice, how many a day would you recommend?
I did not say that. I said the manufacturer said that these tablets are not a sublingual formulation, but that there is some degree of sublingual absorption. The manufacturer is clearly trying to give the "impression" that these are a sublingual formulation by using the term "Microlingual".
This form of thiamine called thiamine mononitrate, is clearly absorbed sublingually to some degree because multiple forum members have reported its efficacy. The one who can answer all of your questions regarding this form of B1 is forum member Daphne who has written a book about this subject. You can message her here :
Dr. Costantini passed away due to Covid-19. I am not aware of anyone who has picked up where he left off, but others on the forum may know more. In the meantime in your prep to start B1, forum member Daphne has written a book on B1 therapy for PD and it is available on Amazon.
Yes, I believe forum member, Marc, had a type of FUS procedure and is taking B1 for many years.
If you scroll up to the top of this thread, you will find information describing how Dr. Costantini determined oral dosing of B1 for his patients. It is also worth mentioning that he found B1 compatible with all standard PD medications.
Hello NewHope1961 ~ I know you didn’t ask ~ but ~ If you have just started looking into Focused US, Oregon Health Sciences University (OHSU) has a very informative video & information on Focused US. I’m sorry that I don’t have a link. I looked at it a few months back. One of the other universities (I’m sorry I don’t know which one) had a nice comparison of DBS & Focused US.
Good luck with B1. Make sure you give it plenty of time!!!
are you a member o FB group Parkinson’s B1 Therapy? If so this link would be helpful to so many in that group. I’m not good at sharing links. Thank you.
My husband has PD. We started him on thiamine last year. Stopped and restarted again this year. This is why:
The first time we used under the tongue SL 100mg twice a week. He responded very fast with the return of his arm swing and better walking. But then he had one of the worst daysI have ever seen. So we stopped the B1 and restarted at a lower dose. This was a mistake. One bad day does not equate to a need to adjust dose. I would not adjust dose unless increase in sx persist. But we did not know. Also the sl is a very variable method of intake. How much you absorb will depend on how long you leave the pull under your tongue without swallowing. My husband had difficulty controlling swallowing, so we were often unsure of his dose. Between these two problems, we became very confused and discouraged and stopped for several months. During the break he had his cataract surgeries.
We have restarted now with oral dose 2000mg daily in divided doses. Oral means that we know how much he is taking. He has been on it three weeks. He can open his mouth all the way again, and his speech is better. We will not drop dose for one bad day. And we won’t use the sl any more even though it is cheaper and in some ways easier. We need to know what he is getting.
As far as adjusting dose, this is generally based on a trend that is occurring over a period of days, not just one day. There are many potential things that could cause one or two bad days of symptoms.
High dose TH is known to cause such a trend change in the 6 to 18 month of use range and this has been discussed at length on this forum and I first wrote about it here :
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Standards (imho)
Website: Dr Costantini's guidelines on Parkinson
B1 dosage warning
