As many of you know, I have had a lot of success with the sublingual version of B1. I started taking it in 2017 and after a few months realised my slowness, my fatigue and my rigidity had all gone. I was diagnosed eleven years ago and since taking B1 have not increased my medication which remains at just 200 mg ldopa per day. Yesterday I came across this very good article on how to take sublingual tablets.
Sublingual B1 is thiamine monoitrate and I'm aware that thiamine hydrochloride (HCL) is the preferred form of B1 for oral administration. There has been talk of monoitrate being bad for the kidneys. I checked this out with Dr Lonsdale, a world authority on thiamine and he said "no" the sublingual B1, being monoitrate, is no danger to the kidneys. A sublingual tablet, if taken correctly, goes straight through the skin and into the bloodstream. Because it is so efficient you need far less of it than if you were taking the oral version. I started in 2017 on 1x 100 mg tablet a day and gradually reduced this over time, and now take just four tablets a WEEK.
Because someone will ask, I get the sublingual B1 from -
It does taste rather bitter but if you keep it firmly under your tongue while it dissolves it's not too bad and you do get used to it in a week or so. Do follow the instructions as to how to take it though. It won't work otherwise.
A doctor friend told me that all tablets would be sublingual if it was possible to make them into tiny enough particles to pass through the skin, as it was a much more efficient way of administration. Perhaps that's why they are monoitrate. Perhaps the hcl version can't be made into small enough particles. I'm just guessing. The main thing is that sublingual tablets can be monoitrate!
I hope this information is helpful.
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Dap1948
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It would only work like a sublingual tablet if it was produced as one with tiny enough particles to pass through the skin. Not many substances are able to be compounded into sublingual versions.
It is my understanding that Levodopa always (and only) enters the blood through the small intestine.
If you crush a regular c/l tablet and put the resulting powder under your tongue, nothing will happen until you swallow it with some liquid and it makes its way to the small intestine.
Note if you crush a regular c/l tablet and stir it into some water then drink it OR crush it with your teeth and then wash it down with some liquid, it will take effect quicker, then a solid tablet, but will not last as long (smaller Tpeak and Thalf).
Lastly there is a c/l ODT tablet (orally disintegrating tablet) formulation, but it is meant for people are unable to swallow a regular tablet, and again it does not do anything until it reaches your small intestine...
I Never used but prescribed to me, according to my neurologist it is complementary to the c / L that is a small immediate additional dose for difficult moments because it is very fast, Max three a day.
I think it is interesting if you want to go on faster than crushed regular c/l in water (which starts to take effect in about 20 minutes), and don't care how long it lasts (it won't last as long as crushed regular c/l in water does).
I don't know how it is actually dispensed (e.g., as an effervescent tablet or powder), but it may save you the trouble of breaking out the mortar and pestle or chewing regular c/l tablets.
as it’s sublingual, you can’t have anything else in your mouth or even swallow the saliva for 30-45 minutes to allow chance for it to pass through the mucous membrane round the tongue and get into the bloodstream. So without!?
hi Dap. Thank you for being here to answer all these questions about the sublingual B1. My husband “Sloboy” ( the name he picked out ) has had inherited Parkinson’s for 20 + (Dad) and age related diabetes, (like mom). He takes metformin for his diabetes and I believe it was your book that had a comment that metformin interferes with B1. At the time I had him on B1 caps HDT. We were not seeing anything happen after two weeks of 2500 mg but then read that comment on metformin and thought that MAYBE sublingual will buy pass that somehow. Rich also is a recipient of DBS in Jan 2011. Maybe a problem there too.? I figured you have heard from all conditions and know if others have to switch drugs from metformin or if sublingual might get around this. Thank you so much for being here. Jean (wife)
hi Jean (wife), do you do Facebook? If you joined our Facebook page, we have medical experts who could answer your question much better than I can. It’s called ‘Parkinson’s B1 Therapy.’ My layman’s thoughts via google are that even if metformin may reduce thiamine, your husband is taking such huge doses of B1 that it shouldn’t be a problem whichever method of administration you use. DBS certainly doesn’t reduce efficacy of thiamine and many of our successful group members have had DBS in the past. Two weeks is quite a short time to see progress. We recommend 4-6 weeks on one dosage before you increase it if you see no progress. I hope this helps you and good luck. 🤞
thank you! Thank you! Thank you! Yes, I have joined the Facebook site and will try to investigate more there but you may have made me feel that my efforts are not in vain!! I thank you SO much for your efforts of putting out Dr. Constantini’s work, and giving every one the hope of better life with just being available with your experience! God bless you !
what sign and symptoms did you have that you were prescribed levodopa?Have you had any sideeffects?how much b1hcl were you taking before sublingual? Thanks for sharing.
I took sublingual from the start. I didn’t start with HCL and change. A doctor friend recommended the sublingual version. I’ve had no side effects from ldopa. My symptoms before B1 were rigidity, bradykinesia, tremor, fatigue.
How long did it take to get relief? I have right side weakness that may or may not be related to Parkinson's. I have a bulging disc L4-L5 with a bone spur pressing on the nerve. When I sit my quadriceps cramp and my big toe cramps and pulls up. Sometimes if I lay a certain way I get the same results. Standing or laying down relieve the pain. Dr wants me to get an epidural and take gabapentin. I'm trying turmeric and arthritis factors for inflammation. They also want to do a nerve conduction test. I have tremors, gait issues with arm swing and slight foot drag and occasional freezing. I sleep very well and have a good sense of smell. Just don't know which way to go. I started PT AND OT EVALUATION but had to temporarily stop due to exposure to cova.I take 500 b1 and many supplements. Any advice would be appreciated. Thanks and I hope you continue to have success with what you are doing.
You have symptoms which people with PD often experience. However you also have other problems too. How long have you been taking B1? Have you seen any symptoms improve since you’ve been taking B1? Sometimes it’s a couple of months before you notice improvements. If you’ve been on 500mg for a month or more with no improvements, it may be time to move to 1000mg of B1 HCL.
Thanks I had been on 1000mg for about a month and I started having freezing episodes so I cut back to 500mg for a while,,,no change, then took a couple of weeks off and restarted 500mg. That's been about 12 weeks. I'm going through to try 1000mg again. I see my neurologist in October and will most likely agree to start medication .just scared because I don't know if I have Parkinsonism or Parkinson's. With all the tests I have recently had and the cross over symptoms of pinched nerve, osteoarthritis cramping muscle weakness right side ,tremors, I don't know where to start. Any suggestions are appreciated.
It might be time to start medication. See what the neurologist says. I don’t take a lot of ldopa but I wouldn’t be without it!Do you take magnesium? I thought it might help with the cramp.
I didn’t take ldopa until I’d been diagnosed for four years. Everything was just becoming such an effort. I was slow, rigid, tremored... I’m a very determined woman and it felt a bit like giving in, but I felt so much better with a low dose of ldopa.
Good to know. Sounds like what I am experiencing. How long did it take for you to get results?The cramping and weakness are getting. me down. How did you get diagnosed?
If you took some sinemet Smitty bear i believe ALL your symptoms would be relieved. incuding your so called pinched nerve. As to whether you have Parkinsonism or Parkinsons what difference do you expect that to make to your treatment? If you got the idea it was Parkinsonism from a doctors letter then you need to know that is universally used by neurologists at first diagnosis.Later they will write Parkinsons (or one of the Parkinson Plus conditions if that is what you have.) Parkinsonism is just an umbrella term.
PD is probably the cause of >90% of 'Parkinsonsisms'. The other causes in that list really aren't that common.
If you have inadequately treated PD (I.e PD that is impacting your QOL and is not treated by prescription medication or equivalent doses of levodopa from some other source), all these adjunctive remedies (like thiamine) are going to be a waste of your time, money, and good QOL years.
Thanks for your advice. I'm frustrated that no one offering a game plan for me to follow. Each specialist has his own agenda and there is little communication between them. I'm starting with OT andPT .PCP and neurologist in October, continue chiropractic treatment and get an opinion from a pain specialist. I am going to hold off on the nerve conduction test until I see my neurologist. I can't get in with my neurologist until October and don't want to have the PA start medication.
The trouble with that is PD is the default diagnosis with any symptoms that fall under the umbrella, and without definitive physical tests. Thus, this is circular reasoning--people get diagnosed with it and then it's claimed that everyone with the symptoms has it. If you look at the history, it originally referred loosely to a collection of symptoms and later took on a status of a disease. It started with Parkinsonism.
1. The link you provided does not even include the word "parkinsonism".
2. "Parkinsonism is not a condition." Patently false.
3. "PD is probably the cause of >90% of 'Parkinsonsisms'." Also false (as well as ridiculous).
4. "If you have inadequately treated PD (... is not treated by prescription medication or equivalent doses of levodopa from some other source), all these adjunctive remedies (like thiamine) are going to be a waste of your time, money, and good QOL years." Just wrong - on so many levels.
This is very good news Dap! Thank you for sharing with the forum! Thiamine Mononitrate had been considered the " wrong form of Thiamine " for so long and now it is known that in some people, it may actually be more effective than Thiamine HCL!
I would like to add that forum member Lizzy9 had been giving her husband Thiamine HCL which was beneficial for symptom reduction, but when she switched him to Thiamine Mononitrate it was a significant improvement over the Thiamine HCL and she and her husband are quite happy about that!
I must stress that when you take B1 sublingually, the thiamine mononitrate does not go through the digestion, but straight into the bloodstream. I would still be cautious about taking thiamine mononitrate orally.
Apparently, mononitrate is stored in fat cells and builds up if it is taken orally. It may also accumulate in the kidneys and cause kidney stones if taken orally in large amounts. Hopefully this link will help...pediaa.com/difference-betwe...
Hello Dap ~ Yes, we are having very good outcome with the B1 mononitrate. My husband takes 25 mg twice a day with skipping 1 or 2 doses one day a week which brings his weekly dose to 300-350mg per week.
I just looked at the link you attached and it says:
“Thiamine mononitrate is used for the preparation of multivitamin formulations and as a food additive. It is used as a food additive because it is more stable and the water absorptivity is low (non-hygroscopic). It is safe to be used as a food additive or in multivitamin formulations because once it is dissolved in water, the nitrate ion is removed and only the thiamine can be absorbed.”
So I am wondering if we should crush them and mix and let it sit in a little water before taking? Any thoughts would be helpful.
We did try the sublingual and could not get the right dose.
I’m pleased that you’re having success. I’m afraid I have no thoughts on whether you should mix it with water to remove the nitrate ion. It’s outside my knowledge or experience. I would say that if it’s working why change. It might not work as well. Your husband takes such a small amount. Hopefully someone might comment with more knowledge.
If I remember correctly, he is still taking a relatively low dose of TM, well below 500 mg/day, albeit orally and he still saw significant improvement over Thiamine HCL once he switched to Thiamine Mononitrate which could mean that thiamine mononitrate is simply more effective than Thiamine HCL for PwP. There really are not many people who have tested TM on this forum other than you and Dap and Dap has never tested thiamine hcl, whereas your husband has tested both and you reported a significant improvement in his symptoms once he discontinued Thiamine HCL and started with Thiamine Mononitrate. The easiest way to find out if sublingual TM is the same as oral TM is to try it. The sublingual that Dap is using is this one and it comes in 100 mg fast dissolving tablets that are placed under the tongue to dissolve quickly. I take the same one, but I do not have PD, so I can not comment on that aspect of it as I am taking solely for the purpose of lowering my IL-17 levels which is also activated and elevated in PwP.
Hi Art ~ We are still very happy with the results from the B1 mononitrate and so grateful for your help. I have looked around a little tiny bit on the internet and some "people" say it is water soluble and others say it isn't. I'm going with that it is water soluble. My HWP is taking such a small dose that I don't think it is a thing to worry about.
I so appreciate all your help.
Have a fabulous day!!
Gail
(PS~I realize this thread is on the sublingual B1, but I'll mention real quick that we are having good outcome using 3 pills of DopaBoost in place of one of his C/L's!! When I have a few moments I'l find the thread we in which we were discussing this and give you a more information. Thank you!)
only '4' stars on amazon... everyone should check the reviews for themselves -- but thanks for posting
I’ve tried this one and it does taste nasty, but I am always amused that customers think the makers can take away the taste of a dissolving product. A molecule tastes like it tastes. If it tastes nasty anything that tastes different from the real thing is not the real thing, nice flavour or not!
And everyone reports that you get used to it very quickly and it stops being unpleasant. Some things are just worth going through that stage which lasted five days for me
Thanks daphne. Very good explanation of sublingual useage. I open my b1 capsules and place on my tongue- i may follow your explanation. I hv had alot of sucess with b1 too though hcl version. I may try monotriate
Opening a capsule won’t make it behave like a sublingual and pass through the skin. It has to be made specially with tiny enough particles. Only try mononitrate if it’s sublingual, but if you’re having success with HCL, why change?!
"Opening a capsule won’t make it behave like a sublingual and pass through the skin. It has to be made specially with tiny enough particles. Only try mononitrate if it’s sublingual ..."
Nonsense. Both thiamine mononitrate and thiamine HCl can be buccally absorbed, as has been discussed elsewhere. They are also water soluble. What may not be absorbed are capsule fillers.
Can to much B1 make tremors,Dystonia and Rigidity worse ?? I’ve tried 1000mg and 500mg a day but those symptoms have gone worse pretty quickly for me 🤔🤔😞😞
I'm copying you exactly. I take it in the morning since I found it helpful to move my rytary toward evening to reduce restless leg. I think it's working for me too. So much better than all those pills. Thanks for your post!
Dap1948 thanks so much for the information! I am currently taking 2g of HDT and would live to reduce my suppliment count! I have definitely seen the benefits of the HDT, and will give yours a try when I run out of mine.
I understand your feeling you’d like to reduce the number of capsules you swallow, however, it may be tricky to work out how much you need of sublingual B1 compared to the oral, HCL version. It will definitely be a lot less as none gets lost in the digestion. As you’ve already found success with HCL I’m tempted to say, why rock the boat! If you’ve got something that works why change?! On the other hand if you know how 2g of HCL feels, you would presumably know whether 100mg of sublingual made you feel the same. I would think you might feel more fatigue, for example, if it wasn’t enough. If you did feel this and wanted to try more than one sublingual tablet a day, I wouldn’t take them both at once. There is probably a limit to how much can be absorbed in one go. And I wouldn’t increase to two tablets every day straightaway, I’d take two one day and one the next etc and build up gradually.
I don’t think that these are sublingual. I think they just melt and you swallow them. Does it say anywhere on the bottle The words sublingual or microlingual?? They are a very Low dosage to be going through the digestion. I would either put your husband on HCL tablets at a reasonable dose (500 mg) or buy the superior source sublingual B1. I’m not surprised that the jury is still out!
Yes, you are right. However, I believed the melting ones had the same effect. Guess I have to buy the liquid form.
He was on IM injections for more than a year while Dr. C. was still with us. After his passing, we have been experimenting with different doses and hubby seems to be doing OK at 100mg/d.
If he’s doing ok, stay on it! However, as it is going through the digestion it should really be HCL to protect the kidneys. Is it hydrochloride or mononitrate?
Interestingly it says sublingual and hcl ONLY in the write up, not on the box. I’m still not sure about it being sublingual. My gut instinct says if it is flavoured it won’t absorb so well, that the flavours will block the thiamine’s absorption, but what do I know!
Tub then. It worries me that at one point on the blurb it says the product dissolves before it reaches the digestive tract. Sublingual tablets shouldn’t go anywhere near the digestive tract. It’s a lot more expensive! But hey, if you like the product And have success with it, then use it
I think you are correct that those are not sublingual. The manufacturer only mentions ease of dissolving for people with difficulty taking pills: solaralabs.com/products/fas...
Huh? Now I'm confused. There was some discussion that the one Despe linked to was not sublingual, so I showed that indeed the manufacturer website does not claim that it is sublingual. The other manufacturer being discussed (that you linked to) does claim that it is sublingual, and the name implies it by including the word "microlingual." Is this not a discussion about sublingual B1? If I've somehow gotten off-topic, I apologize.
eta: I see you've added the “…go to work fast,under the tongue”... the website you linked to also shows the directions are to use it sublingually or can be swallowed like a regular tablet. But the whole topic of what makes something sublingual is one that I have no expertise in. Some people are saying that it must be a specially designed particle that is small enough, otherwise it just winds up in the digestive tract. But, again, that is not something I know anything about. (so I'm only showing what the manufacturer's claim)
no, no it's okay. MicroLingual® is a registered trademark. Thiamine mononitrate being fat-soluble is always absorbed by the sublingual mucosa. at this point, if the product mentioned by Despe is Thiamine mononitrate and it dissolves well in the mouth, it could have the same effects as the other, but it is not written what it is. Here is an article with a simple explanation of how a sublingual product works:
Active ingredients become readily available for absorption before entering the digestive tract. Great tasting formulas are available for popular ingredients across the spectrum of health categories.
Yes I take superior source. It should go straight through the skin to the bloodstream to be ‘sublingual'. It should not go through the digestive tract.
It's not the same. Daphnes sublingual tablet is absorbed direct into the bloodstream and is therfore, more or less equivalent to the iv injection. The one your husband is taking is absorbed in the digestion like most B1 tablets people on this forum take.
Yes. Apart from the really simple point of not saying sub-lingual
absorption before entering the digestive tract
Means "turned into something really easy to quickly digest before it gets to the place where it has to be digested and is digested"
It does not mean "is absorbed direct into the bloodstream before it gets to the digestion"
Effectively you have stopped giving your husband high dose Thiamin and given him regular low dose, deficiency correction Thiamine
And depending on how you interpret "the jury's out" it would appear that high dose B1 did little or nothing for him, given stopping it makes no difference.
We can say that it is sublingual if it dissolves quickly in the mouth, it is a form of fat-soluble b1 (thiamine mononitrate or benfothiamine) and does not irritate the mucous membranes. I personally think that the nitrates produced by this form of B1 could give little unwanted effects and it is very different from B1 HCL. Thiamine always affects the central nervous system at any dose and form, promoting the production of energy at the cellular level that will improve fatigue. This is easy to check, just take a test.
I don't think I have experienced an obvious, noticeable increase in energy taking thiamine (the answer usually then is that it can take up to 6 months to notice )
"The jury's out (deciding whether guilty or not guilty" means "I'm not sure", and in the context Despe used it probably meant "it doesn't seem to be working"
damn WTP, you just did it again: you attributed a thought to Despe that maybe she doesn't have.
It is a scientifically acquired fact that thiamine contributes at an appropriate dose to increase cellular energy; athletes such as extreme mountain climbers always carry it with them for very difficult times, but they are well-fed trained people and do not use alcohol and drugs while climbing.
I quote the first post taken at random on Google: “Vitamin B1 contributes to the carrying out of the important process of converting glucose into energy. Like vitamin B2, vitamin B1, or Thiamine, has the role of synthesizing the energy processes of the organism, releasing the latter the energy necessary to carry out daily activities. ".
It is not the only aspect, but for this it will take half an hour to see it, if you live healthy and the thiamine is good… emh i.e. more bitter than ever.
So it doesn't work at all. Why else would you be so evasive? People with nothing to hide give straight answersFair enough, it doesn't help your husband in any way (although that's the fault of his personality)
Mmmmm... my feeling is that you merely wait 10 minutes to get the water out of your mouth. The main thing is not to have toothpaste or food in your mouth beforehand which would hamper absorption
When you say you don't swallow it, how long is that for? I'm trying it and it's well & truly dissolved in my mouth (and not so bad a taste either imo). But how long do you wait before you swallow it? Thanks
It dissolves quite quickly but it takes time for the melted tablet to pass through the skin into the bloodstream. Half an hour is the recommended wait time...compoundingrxusa.com/blog/c...
Hi Dap! I wonder if you are able to tell me how to convert from oral Thiamine HCL to Sublingual dosage. For some reason, I am just seeing this thread and I am highly interested in trying sublingual. Hoping it is effective and eliminates the side effect of hypertension. I currently take 2000mg Thiamine HCL per day.
There is no equivalent dose as one’s oral dose is affected by the efficiency of the gastrointestinal system. So what people need in the oral tablet varies because of this, but it doesn’t affect a sublingual dosage. What I would suggest is that you start with one 100mg sublingual tablet a day, taking it as per instructions in book, but be tuned in to recognise any overdose signs. I’ve not come across anyone who has had success with more than one tablet per day and quite a few who settle on less by having a day or more off in the week.
Another thought… Because of your hypertension problems, would it be better to start lower and work up? Something like four or five tablets a week spaced out to start with?
following up after about 3 months. I was taking 4000mg b1 a day, switched to 3 doses a week of sublingual 100mg, now 2 per week. My tremors are so much better that last night I was able to help my son solder a custom electronic modification to his electric guitar. It was like doing microsurgery.
To be fair, I did have one tremor episode last weekend when I went to a party and I think the reason was because I had 2 rum and cokes (caffeine) and I might have been anxious because there were a lot of people there. Note: I dont really drink alcohol very often so 2 drinks is a lot for me. Although they were not very strong drinks. I didnt even get a buzz. I think it was the coca cola or the anxiety.
Did you notice any other difference from the switch to the melt in your mouth tabs? I have heard 3 people now on this forum say that the 100 mg melt in your mouth thiamine mononitrate worked significantly better for them than oral thiamine hci.
So I will take your comments as further confirmation that Dap's method of using Thiamine Mononitrate as further confirmation that in some people, Thiamine Mononitrate is more effective than Thiamine Hydrochloride and at a very significantly lower dose!
Forum member Lizzy9 reported similar benefit of Thiamine Mononitrate as superior to Thiamine HCI in her husband and of course Dap also.
Im going to kick it down to 1 dose of 100mg sublingual B1 per week. Might even divide that up to several smaller doses. Get a little agitated when I take it, which is a sign that it is too much. Needless to say, this is a minuscule amount compared to the 4000mg per day of Thiamine HCl I was taking every day! Tremors are improved most of the time.
Are you familiar with EZ Melt brand? They have B! as well as other vitamins. Made here in the US so might be more for shipping to the UK. I'm going to try it soon. If anyone has experience with them let me know.
We are all waiting for someone to try EZ melts. I believe they are 25 mg which would be much handier than chopping up 100 mg ones! Let us know how you get on please.
I've found nothing on their site that claims their pills are sublingual. Rather, they only claim that they dissolve easily, are non-gmo, etc. I have emailed them asking about it. If I hear back I'll post it here.
Something like 50mg a day is a reasonable place to start. If that didn’t produce results after 4-6 weeks you could increase to 75mg a day or a combination of 50mg on certain days and 75mg or 100mg on others…
This is the response I just received from EZ Melt:"Our melts tablets are only intended to dissolve in the mouth with a nice flavor and texture, and make the ingredients available for absorption throughout the gastrointestinal tract."
In other words, no, they are not sublingual. The only difference between EZ Melt pills and regular pills is the taste and how fast they dissolve so you don't have to swallow big pills. But you'd have to swallow a whole lot more of the EZ Melt pills.
In my opinion, the part that says: "make the ingredients available for absorption throughout the gastrointestinal tract." is very misleading. There's no evidence that B1 absorption or delivery will be enhanced if it's available anywhere in the gastro tract. No evidence that more of the medicine will make it into the bloodstream.
The only place I've seen a reference to "sublingual" when describing EZ melt is in the description on Amazon. That's because they want shoppers to find their pills when someone searches for "sublingual". By using that word as a search term, EZ Melt is violating Amazon's rules and I'll be reporting them.
But they don’t even state what kind of thiamine they use. Hcl? Mononitrate? IMO only mononitrate thiamine can be sublingual, But I'm not a chemist.
Quote:
“Route of sublingual administration
The sublingual is a route of administration used to avoid the hepatic first pass phenomenon.
Routes of Administration
ENTERAL
Oral
Sublingual
PARENTERALS
Intravenous
Intramuscular
Subcutaneous
INHALATION
TRANSCUTANEOUS
The pharmaceutical form is blocked with the lowering of the tongue, so the release of the active ingredient occurs in the sublingual region. The active ingredient contained in the pharmaceutical form must dissolve very quickly, be active at low dosages and very fat-soluble.
A classic example is constituted by nitrates that are taken sublingually, for the treatment of angina.
The advantages of the sublingual route are:
rapid absorption;
the drug reaches the general circulation by skipping the hepatic filter (hence the "first pass effect");
immediate achievement of the bloodstream;
with the sublingual administration route, the possible destruction of the drug by the digestive juices is avoided;
the residual drug can be eliminated once the effect is achieved;
The main disadvantages of sublingual administration arise from the uncertainty in dosage. It also cannot be used for drugs that:
Something like 50mg a day is a reasonable place to start. If that didn’t produce results after 4-6 weeks you could increase to 75mg a day or a combination of 50mg on certain days and 75mg or 100mg on others…
Dap , I am struggling to find sublingual thiamine mononitrate to import to where I live but I can find just ordinary tabs . Have roamed around and it seems it is perfectly safe to take in low doses. Any thoughts on what dosage might have a positive impact? Taking into account of course that you are not giving medical advice but simply an opinion
Am I understanding correctly that you take only 100 mg of B1 per day, four times a week? Not the 500-1000mg dosage that a "typical" high-dose thiamine regimen would involve?
Sorry, I just sorted all the Q&A's by most recent, and now I see that you've already answered a similar question with this answer: "500mg is an oral dose. Sublingual doses are tiny in comparison." But I don't think my sublingual doses of B-12 were tiny compared to the oral tablets...so I'm not sure of the validity of that statement. I will have to look into this some more.
The people in our Facebook group on sublingual tablets take 100mg or less. Those who take oral tablets take roughly between 300mg and 3,000mg. The sublingual tablets, taken correctly, goes straight into the bloodstream while the oral tablet goes right through the digestive system and finally gets absorbed through the intestines.
Hi again Daphne..my dr just recently recommended your book to me for my husband (72 yr) and to try the B1 therapy...as the levo carb is not really helping him...he never really reduced symptoms after being on it for 6 months...in fact, we tried more and his symptoms became worse..I have always been a follower of "Natural Medicine" and when my dr told me about the book and the B1, I immediately bought both...My husband just started with the 500mg caps and is up to 2,000mg a day for the past week...so he just started but I saw how the sublingual may be a better option....so how much should he start with the sublingual once he finishes the 500mg caps...thank you for writing this book and I'm spreading the word about your book to help others. God Bless...and continued good health!!
You appear to have gone up the doses quite quickly. We recommend that your husband stays 4 to 6 weeks on a dose because improvements can be slow and subtle. Just check that the 2000 isn’t too much for him. You would know that it was because his symptoms would worsen and he might become edgy and impatient! When you start on the sub lingual, I should begin by taking a whole tablets on five days out of seven for example he could leave out Mondays and Fridays. Again he needs to stay on the dose for 4 to 6 weeks. If you feel there has been no improvement after this time, you can increase the dose to 6 days out of seven. If however you notice his symptoms worsen, then take a break of one to 2 weeks and restart on fewer days of the week, perhaps four days out of seven. I hope this makes sense and good luck
Thank you for your reply.....Just wanted to ask you ....I did see somewhere on here or another site...Dr C had a breakdown of doses....mild...moderate....severe....I had wanted my husband to get up to the moderate which was 4,000mg of B1...we didn't get up to that amount...he said he feels ok with the 2,000mg....still tremor and tongue movement and his gait is off and his step when he starts to walk...other symptoms as well...when I read your book I didn't realize that he has so many of the PD symptoms ..he will drop to 1,000mg of B1 and stay on that for 4-6 weeks along with his carb levo of which he cut back because of worsening symptoms. Thank you so much..
By the end of his working life, Dr C was starting people on 500mg, so I think he’d realised his initial oral dose recommendations were rather high. We have to listen to our bodies. I have an email he sent me which clearly says, start at 500mg and slowly increase until you find the dose that makes you feel better. He did not say take this or that dose because you weigh this or that amount. Good luck
Hello Daphne, is there an equivalent sublingual product that I can buy? The one you suggested is hard to get from Italy and I cannot find a similar one. Thx!
Beware EZ melts are NOT sublingual whatever it says on Amazon. They go through the digestive system. You would therefore have to take nearly half a tub for each oral dose!!
It does not appear that Superior Source Microlingual B1 is actually sublingual either, based on their formulation of the following ingredients below :
These appear to be flavoring, filler, sweetener, compressibility enhancer and binder only. Their literature does not actually describe their product as sublingual. Microlingual is their trademarked term and they say ' it dissolves under the tongue to head directly into the body '. It does not say to enter into the blood, but the truth is that once it enters your mouth it has already directly entered into the body. I believe this is just a sales gimmick on their part. Thiamine mononitrate powder alone in the mouth will do the same thing.
It is likely that you can improve the absorption of this product by dissolving it in a small amount of water first because thiamine mononitrate(TM) is highly dissolvable in water, whereas saliva has fat content and TM is not fat soluble. By predissolving in water it will be better absorbed in the mouth including under the tongue, on the tongue and buccal administration. The downside is this method may slightly increase the taste of the product.
I couldn’t have got the results I have got over 5 1/2 years if it didn’t work sublingually. I now take a quarter of a tablet - 25mg - every fifth day. If I take it every fourth day I get overdose symptoms. I am just working from my body’s reaction. Many people in my Facebook group use the same sublingual tablet with good results. The dose is far too low to be working as an oral tablet.
It dissolves exceedingly quickly in the mouth. I don’t think dissolving it first in water is necessary. The problem people have, is holding the saliva in the mouth long enough for it to pass through the mucus membrane and into the bloodstream. Unless of course that you are suggesting that if it is mixed with water, rather than saliva, more of it will pass through the mucus membrane?? I think holding a mouthful of water for the suggested 30 minutes would be impossible, whereas saliva is manageable.
I must have poorly worded my reply, I am sorry for that.
I did not mean to say that TM does not work or is not sublingually absorbed, I already know that it does and is . I was trying to say that I feel Superior Source is trying to imply that their formulation is a special sublingual formulation implying that others won't work in a very basic formulation such as theirs . The water soluble thiamine mononitrate(TM) powder can be sublingually absorbed all by itself in raw powder form or in a basic pill such as Superior Source offers. If I could not get their pills I would just use TM powder. Their pills are convenient, but not internationally available, so having an option to their pills may be a good idea for those who can not get them. Many things that dissolve in saliva can be sublingually absorbable and TM is in that category. Predissolving in water may allow some people to potentially lower their dose because TM is highly water soluble.
…you’ve given me a thought! Thanks! If people want a smaller dose, they could just measure out TH powder then, rather than cut the pills?
I’d like to know if you have an opinion on another aspect of sublingual administration. Do you think that there’s a limit to how much can be absorbed through the mucous membrane at one time?. I reduced my dose by halving then quartering the pills, but didn’t feel I had dropped the dosage as much as I would have expected. Another group member changed his dose from a half tablet everyday to a whole tablet every other day and resulted in feeling underdosed on the whole tablet every other day.
Yes, I think sublingual bioavailability varies by the individual and as usual, it will have to come down to trial and error to find the optimal dose. I think your method optimizes the available dose from the pills.
The TM powder seems to offer more dosing variability and precision. The downside of course is you give up the convenience of the pills and you need a milligram scale ($20~$30)initially to determine the appropriate sized scoop to use to measure your powder dose conveniently. B1 powder dosing between 50 mg and 100 mg is a very small amount of powder.
You haven’t quite answered my question which I haven’t explained well. The bioavailability would vary per person, yes, but is the amount one person can absorb at any one time limited regardless of the size of the pill?
For example… with a 50mg tablet, say I absorb 80% - 40mg. Would I absorb 80mg (80%) of a 100mg tablet or might there be a limit to the amount of TM my mucous membranes ca absorb at any one time? Perhaps I could only absorb, for example, 60mg maximum at any one time which would only be 60%… So taking 100mg every other day would not be as high a dosage as 50mg every day….
Yes, clearer, but now that I understand what you are asking, I do not know the answer to your question, but I think the answer will vary by the substance being used because the oral mucosal tissues will first reach a point of equilibrium with the solution in the oral cavity and will eventually become temporarily saturated and saturation may vary by molecule size.
Well shucks ... maybe thiamine HCl can be absorbed through the oral mucosa, too! Has anyone looked into that?! 🤦
Maybe we don't need to be swallowing GRAMS of the stuff, maybe a little powder under the tongue .. or up the nose. 😤 (Joking. I wouldn't try up the nose ...)
Mentions thiamine, though I did not find the reference used. Also discusses issues brought up in this thread:
Thiamine absorption across human buccal mucosa in vivo
Evered, D.F.; Mallett, C.
Life Sciences 32(12): 1355-1358, 1983
Six adults kept a pre-incubated buffered solution of thiamin in their mouths for 5 min. The buccal mucosa was permeable to thiamin. The absorption rates showed saturation with respect to initial concentration over the range 0.05-1 mmol/litre.
The term "sublingual" is very familiar to me since having a very complicated complete hysterectomy 1.5 years ago. The bioidentical hormones I currently use are sublingual...and they are also referred to as TROCHES. (I have not felt better in 2 decades.) However, right after surgery, I was given the hormones I needed via a TRANSDERMAL SPRAY. It was absorbed directly into my bloodstream without going through any digestive process at all. It was to be sprayed onto an area of the body with VERY THIN SKIN. I used it on the inside of my forearm each morning and it lasted all day and night. I loved this spray for it helped me finally feel normal again. Then, Covid affected the availability of one of the TRANSDERMAL SPRAY'S ingredients, so it could no longer be manufactured. It was then that I began using a DIFFERENT TYPE OF TRANSDERMAL MEDICATION. And the VERY THIN SKIN was to be found between the gums and cheek or UNDERNEATH THE TONGUE.
(One thing I did have to learn through weeks and weeks of research is that with sublingual hormones pills/lozenges anyway, placing the TROCHE in the same spot under the front of my tongue twice a day for months, was continually reducing its efficacy! The cells of the skin lining can become saturated and not absorb effectively anymore. Thus I now rotate 4 placements: Under left side of tongue, under right, between left cheek and gum, between right cheek and gum. I felt like a new person again when I began to pay attention to the receptivity of the skin lining, which is the key to making the most of a SUBLINGUAL or TROCHE. My troches can only be made by a compounding pharmacy.)
I DO NOT KNOW if SUBLINGUAL B1 IS THIS SENSITIVE TO THE FRESHNESS OF THE SKIN. But I do know that SUBLINGUALS are absorbed into the body in a vastly different way than a regular pill or capsule. And is designed to be taken in differently...or it won't work. And I know that regular pills and capsules are not absorbed this way. Only SUBLINGUALS.
Hi Daphne, is a patch a valid alternative in terms of high absorption? If that is the case, can you suggest a brand? I need to get rid of injections and oral capsules are not a valid alternative for me.
I think one member of our fb group is trying them, but I have no idea how much would be absorbed. Have you thought of using powder? It goes through the digestion but you don’t have to swallow huge capsules.
certainly! Many of us are down to a quarter. Take a break from B1 and if you feel better during the break, it will be a sign that your dose was too high, so restart at a lower dose. I usually recommend leaving out days before you get to cutting the tablet which is tricky! Try taking the tablet on four days a week, Monday, Wednesday, Friday, and Sunday for example.
I bought your book Parkinson's And The B1 Therapy the sublingual V B1 tablets you recommended, and started to take 1 100mg tablet daily from Nov. 23, 2022. So far no good or bad feeling yet as I have only taken 4 tablets.
I am a 65 years old male, was diagnosed with PD at the end of year 2014. Currently taking rasagiline, levodopa, and pramipexole.
I would like to consult with you about the right way taking the sublingual V B1. I put the tablet under my tongue and quickly the tablet dissolved. Soon saliva mixed with the dissolved B1 traveled to other areas of mouth, with a bitter-sweet taste. I kept the saliva in mouth for about 45 minutes, no eating, no drinking, no cleaning, and then swallowed. The longer the time passed, the more the saliva accumulated. I do not feel the bitter-sweet taste getting lighter when I swallowed. I wonder if any B1 go to my blood stream through the tongue skin. Can you please comment on my tablet taking procedure and any tips?
it sounds as if you are following directions perfectly. Just try not to swallow. I know it’s difficult. With sublingual you do the best you can at holding the saliva in the mouth. Most people agree it gets easier and the taste less bitter. Are you on Facebook? This group will answer questions and give you support. facebook.com/groups/parkins...
I just received ... finally... my superior source tablets. And I am just crushed. No pun intended, well maybe a little. But I just can't believe that this was never mentioned, that this most prized source has LACTOSE in it. What about those who are "intolerant" (nearly everyone nowadays)? And what about how horrible animal milk is for you, for the cows, for the planet, and just in general not intended for human consumption. Seriously, I can't believe nothing was mentioned anywhere about this. So very disappointed. I was waiting with such anticipation for this. Very very bummed. It is written in the fine print on the website. I will be calling the company tomorrow. Meanwhile, does anyone have a source that is not milk or animal product based please? I have been waiting for months to try this. Just super disappointed.
source naturals coenzymated B1 is milk free. It only has 13 mg of B1 per pill. However, because it’s coenzymated it is much stronger, so seems to have similar strength to a 100mg tablet of superior source.
THank you so much! I did already order the bluebonnet b1 hcl. But will definitely try this one if that doesn't do it. What's the best way to know if it's working? Could my tremors decrease for example?
Some find tremors are helped, but it is the most challenging symptom to eliminate. One of the earliest and most universal improvements people talk of is more energy. It’s important that you search for the dose which makes you feel better because that’s the dose which will slow progression and bring you other symptom improvements over time.
Thank you. My only symptoms are tremors in the right hand and hip, and stiffness plus constipation. Does it even make sense for me to do this? I keep wondering if the jitteriness I get might actually be a result of the b complex I'm taking while I wait to get the hcl I ordered.
Without the right dosage of B1 things will progress. Stiffness will increase and constipation isn’t good. Even if the B1 didn’t eliminate all your tremor, it should make your medication more effective, slow PD progression, improve constipation, reduce stiffness, improve bradykinesia, improve mood and sleep. But the choice is entirely yours.
If you suspect that b-complex is increasing your problems then test it by taking a break and seeing if you are better not on it. If it is the b-complex it could be something in it that your body doesn’t want, or doesn’t want so much of.
I'm not taking medication, and not planning on it unless things get dire... my diagnosis is not 100% and I am still not sure I truly accept it. Hence trying b1 is also an attempt to see whether my body responds. And it has kind of responded similarly to mucuna supplements, so I am leaning towards the idea this is possibly from two bouts of covid, plus a few injuries which are exactly at the root of both my tremors.
having read your book parkinsons & the b1 therapy I am keen to give it a try. I have had pd for 23 years & have probably used all the conventional meds. I want to get this right & would appreciate comment on the tablets I have purchased which are thiamin mononitrate b1 but the instructions for taking days to swallow with a glass of water
Unfortunately thiamine mononitrate tablets/capsules are not advised! Thiamine hydrochloride (hcl) are kinder for the kidneys. If you joined our Facebook group we would be able to support you through your B1 journey. The group has over 5,000 members now.
I have known I should decrease my dosage often over the years. For the past few years the unwanted symptom which signalled that the dose was too high, was a return of rigidity making my neck very stiff and walking more difficult again. It can be any unwanted symptom though.
For those wishing to try pure thiamine HCl powder via the oral mucosa route I have done some rough calculations:
1) First I emptied 3 Vitacost B1 HCl 500 mg capsules into a teaspoon (5 ml). It was ~90% full.
This Vitacost product contains fillers and I guesstimated 10% for this - based somewhat on what would not dissolve in water. (Pure thiamine HCl dissolves completely. Yes, this is a rough calculation!)
So we have 1.5 g of pure B1 filling 90% of 90% of 1 tsp. 0.9 x 0.9 x 5 ml => 1.5 g pure B1 HCl powder occupies 4 ml.
So 1 tsp holds 5/4 x 1.5 g = 1.9 g pure B1 HCl powder.
2) Then I used some data to provide a second estimate:
Just to clarify how much you are taking: In the opening statement you say that: "I started in 2017 on 1x 100 mg tablet a day and gradually reduced this over time, and now take just four tablets a WEEK."
Later you state that you take: "I now take a quarter of a tablet - 25mg - every fifth day."
Is the difference due to your cutting down the dosis? Because there seems to be big difference
initially I didn’t hold the dissolved tablets under my tongue for the time we now recommend - 30 to 45 minutes. I probably swallowed it after 10 minutes. This in itself would make a huge difference to the potency. However I have continued to reduce my dosage while still taking the sublingual tablets efficiently. I don’t know how we could explain why this happens to people. It might be too much to hope for, that I now have fewer neurons in need of repair! I have never reduced the tablets because my head tells me to. I have always reduced because my body tells me it needs less.
I am currently taking 2×12.5 mg a week. Superior source Microlingual tablets are 100 mg each so invariably end up having to be cut into two pieces of four. For smaller doses EZmelts B1 come in a tablet which is 12.5 mg. However, these are large tablets, so two at a time would not be possible sublingually. And the maximum dose would be one tablet per day which would be 87.5 mg per week, which is quite low for people who are just starting. The EZmelts can also be chewed and swallowed down with water but that would make them an oral tablet which would need a higher dose.
I do not know anyone using it. It doesn’t say what form of B1 it is. Would you try and use it sublingually or would you swallow it straight down? The UK Amazon has many choices of oral B1 hydrochloride, or alternatively American firms will send sublingual B1 to UK.
Hi Daphne, did the sublingual build up in your system over time? I’ve noticed great effects that peak within 1-2 hours of taking but slowly start to wear off throughout the day. Will the concentration of b1 build up in my system to where I don’t need to take it every day to get the same tremor reducing effects? Thanks!
Very few if any people with Parkinson’s report an instant reaction to B1. It doesn’t work like levodopa! Thiamine can stay in the body for a couple of weeks or more, so repeated doses gradually increase the level of thiamine in the blood, till your intake balances the output. If this level is the right one for you, then symptoms will gradually improve over time as the B1 improves the neurons that were ailing, so that they can produce dopamine once more. (This is my layman’s explanation based on Dr C’s explanation to his patients!). Having said all that, tremor is probably the hardest symptom to improve. I would journey on with B1, hoping you find the right dose to slow or stop progression and accepting with gratitude any symptom improvements it supplies along the way. If you only do it to banish tremor, you may be disappointed. Some people report it does help their tremor, others add levodopa for tremor. The B1 therapy is an adjunct therapy, it is not a miracle cure, though many people find it improves things so much that they feel they have their life back and they forget they have PD.
Good Gawd ... this thread is a cornucopia of misinformation. The blind leading the blind - while many clap in appreciation.
As posted above, both thiamine mononitrate and thiamine HCl are water soluble and buccally absorbable and are available in pure (powder) form - i.e. without fillers (which are unlikely to be either buccally absorbable or water soluble. See, ahem, Daphne's recommended formulation.)
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