How to take sublingual B1: As many of you... - Cure Parkinson's

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How to take sublingual B1

Dap1948 profile image
224 Replies

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.

compoundingrxusa.com/blog/c...

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 -

pureformulas.com/no-shot-b-...

It is very cheap!

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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224 Replies
Fed1000 profile image
Fed1000

Very interesting. Do you know if sublingual levodopa exists?

Dap1948 profile image
Dap1948 in reply to Fed1000

I’m pretty sure we would be prescribed it if it did. One of the many things whose particles are too large I guess!

Fed1000 profile image
Fed1000 in reply to Dap1948

It's possible. Thanks

Fed1000 profile image
Fed1000 in reply to Fed1000

Hi Dap, Do you think the effects of levodopa would dissipate if taken in crushed form sublingually?

Dap1948 profile image
Dap1948 in reply to Fed1000

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.

in reply to Fed1000

Hi Fed1000,

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...

Fed1000 profile image
Fed1000 in reply to

Perfect Levod, thanks.

Gioc profile image
Gioc in reply to Fed1000

There is melevodopa that dissolves in water and has a rapid effect, in the trade name in Italy is Sirio.

en.m.wikipedia.org/wiki/Mel...

Fed1000 profile image
Fed1000 in reply to Gioc

Hi Gio' thank you, the product is interesting, I had never heard of it. Are you using it? Do you think it is preferable to Sinemet?

Gioc profile image
Gioc in reply to Fed1000

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.

Fed1000 profile image
Fed1000 in reply to Gioc

Great information as always Gio'.

in reply to Fed1000

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.

Fed1000 profile image
Fed1000 in reply to

Thanks again Levod.

Vik38 profile image
Vik38

Thank you Dap1948 for sharing this information. I personally take B12 in sublingual form. But will get some B1 for my hwp.

Seamus6 profile image
Seamus6

Good info - out of curiosity, which part of the day do you take the B1?

Ta.

Dap1948 profile image
Dap1948 in reply to Seamus6

I take it first thing, after my water

gomelgo profile image
gomelgo in reply to Dap1948

with food or without?

Dap1948 profile image
Dap1948 in reply to gomelgo

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!?

eschneid profile image
eschneid

Thanks Dap,Had an issue with blood pressure rising from the Vitacost HCL. This might give me another shot.

Er5

Dap1948 profile image
Dap1948 in reply to eschneid

Oh good luck

Sloboy profile image
Sloboy in reply to Dap1948

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)

Dap1948 profile image
Dap1948 in reply to Sloboy

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. 🤞

Sloboy profile image
Sloboy in reply to Dap1948

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 !

Sloboy’s Jean.

chocoholic324 profile image
chocoholic324 in reply to Dap1948

I found 2 Parkinson’s B1 Therapy groups on fb; one public and the other private. Which has the medical experts?

Dap1948 profile image
Dap1948 in reply to chocoholic324

m.facebook.com/groups/parki...

gaga1958 profile image
gaga1958 in reply to Sloboy

metformin does reduce B12

Smittybear7 profile image
Smittybear7

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.

Dap1948 profile image
Dap1948 in reply to Smittybear7

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.

Smittybear7 profile image
Smittybear7 in reply to Dap1948

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.

Dap1948 profile image
Dap1948 in reply to Smittybear7

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.

Smittybear7 profile image
Smittybear7 in reply to Dap1948

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.

Dap1948 profile image
Dap1948 in reply to Smittybear7

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.

Smittybear7 profile image
Smittybear7 in reply to Dap1948

I do take magnesium 2 at night. I also take two minerals during the day. What made you go on the medication? Thanks for your help

Dap1948 profile image
Dap1948 in reply to Smittybear7

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.

Smittybear7 profile image
Smittybear7 in reply to Dap1948

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?

Hikoi profile image
Hikoi in reply to Smittybear7

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.

Smittybear7 profile image
Smittybear7 in reply to Hikoi

Thanks for your help

Hikoi profile image
Hikoi in reply to Hikoi

PS I take regular meds and no alternatives. I do not take thiamine.

kevowpd profile image
kevowpd in reply to Smittybear7

Parkinsonism is not a condition. That term is used to refer to symptoms that could be caused by PD or some other things:

mayoclinic.org/diseases-con...

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.

Smittybear7 profile image
Smittybear7 in reply to kevowpd

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.

Smittybear7 profile image
Smittybear7 in reply to kevowpd

I am taking the B1. I'm starting up the dose to 1000 mg

333Steve profile image
333Steve in reply to kevowpd

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.

chartist profile image
chartist

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!

Art

Dap1948 profile image
Dap1948 in reply to chartist

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.

chartist profile image
chartist in reply to Dap1948

Why is that?

Art

Dap1948 profile image
Dap1948 in reply to chartist

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...

LAJ12345 profile image
LAJ12345 in reply to Dap1948

I assume only a small amount actually is absorbed so most would be swallowed.

Dap1948 profile image
Dap1948 in reply to LAJ12345

The article talks of “the full amount of the medication reaching the bloodstream.” by this method. I aim not to swallow till it is absorbed.

LAJ12345 profile image
LAJ12345 in reply to Dap1948

Wow. Interesting.

Lizzy9 profile image
Lizzy9 in reply to Dap1948

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.

Thank you for your help and information.

Have a fabulous day!!

Dap1948 profile image
Dap1948 in reply to Lizzy9

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.

gaga1958 profile image
gaga1958 in reply to chartist

Is Thiamine Mononitrate only taken sublingually? Considering the delivery process, can it be effective as a swallowed pill too? Thx

chartist profile image
chartist in reply to gaga1958

gaga,

In my opinion , yes, but it will likely require significantly more TM to get the same effect as a relatively low dose of sublingual TM.

Art

Lizzy9 profile image
Lizzy9 in reply to chartist

Hi Art ~ I wonder if my husband is taking the mononitrate incorrectly since he is not taking it sublingually?Any thoughts?

Thank you ~ Gail

chartist profile image
chartist in reply to Lizzy9

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.

amazon.com/Superior-Source-...

Other suppliers sell this product for significantly less than Amazon sells it for, such as this one, making it fairly inexpensive :

evitamins.com/b1-superior-s...

Art

Dap1948 profile image
Dap1948 in reply to gaga1958

B1 mononitrate can be bought in an oral version but it can cause kidney stones in high doses

Lizzy9 profile image
Lizzy9 in reply to chartist

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

LAJ12345 profile image
LAJ12345 in reply to

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!

Dap1948 profile image
Dap1948 in reply to LAJ12345

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

LAJ12345 profile image
LAJ12345 in reply to Dap1948

Yes, if they work it certainly is worth it. It’s just funny people think it can be made to taste sweet.

Dap1948 profile image
Dap1948 in reply to

Yes they taste bitter, but if you take them properly, the taste is contained. Who knows what the reviewers on Amazon were taking them for!!!

alaynedellow profile image
alaynedellow

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

Thank youp

Dap1948 profile image
Dap1948 in reply to alaynedellow

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?!

alaynedellow profile image
alaynedellow in reply to Dap1948

True.

OAFC profile image
OAFC

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 🤔🤔😞😞

pmmargo profile image
pmmargo

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!

hanifag profile image
hanifag in reply to pmmargo

Please tell me the brand name

pmmargo profile image
pmmargo in reply to hanifag

superior source microlingual B1 from amazon

SAGoodman profile image
SAGoodman

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.

Dap1948 profile image
Dap1948 in reply to SAGoodman

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.

Despe profile image
Despe

Dap,

Hubby started

amazon.com/EZ-Melts-Thiamin....

The jury is still out there. :)

Thanks for sharing again your good results with B1 sublingual.

Dap1948 profile image
Dap1948 in reply to Despe

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!

Despe profile image
Despe in reply to Dap1948

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.

Dap1948 profile image
Dap1948 in reply to Despe

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?

Despe profile image
Despe in reply to Dap1948

It's HCL, but still sublingual, places it under his tongue and melts within a few seconds.

Dap1948 profile image
Dap1948 in reply to Despe

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!

Despe profile image
Despe in reply to Dap1948

What box? It's not in a box. The one you are using has milk, stevia, and cherry flavor.

Dap1948 profile image
Dap1948 in reply to Despe

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

in reply to Dap1948

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...

Gioc profile image
Gioc in reply to

neither do they, it seems to me ...superiorsourcevitamins.com/...

in reply to Gioc

"Lingual" is part of the name. Oh! And in the description on that link: "Our Instant Dissolve MicroLingual® Tablets go to work fast,under the tongue."

Gioc profile image
Gioc in reply to

“…go to work fast,under the tongue”

all other brands too, (let's talk about b1) :-)

in reply to Gioc

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)

Gioc profile image
Gioc in reply to

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:

m.my-personaltrainer.it/far...

in reply to Gioc

Oh, I see. I just edited based on your edit. Glad to understand what you meant, thanks!

Despe profile image
Despe in reply to Dap1948

Are we talking about the same B1? You take walmart.com/ip/Superior-Sou...

and husband takes walmart.com/ip/EZ-Melts-Vit...

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.

Dap1948 profile image
Dap1948 in reply to Despe

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.

Despe profile image
Despe in reply to Dap1948

We are talking about the same thing, Dap. :)

Despe profile image
Despe in reply to Dap1948

Dap,

The link you provided refers to what exactly B1 hubby takes does.

WinnieThePoo profile image
WinnieThePoo in reply to Despe

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.

Despe profile image
Despe in reply to WinnieThePoo

WTP,

Are we reading the same thing? :)

WinnieThePoo profile image
WinnieThePoo in reply to Despe

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.

Gioc profile image
Gioc in reply to WinnieThePoo

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.

WinnieThePoo profile image
WinnieThePoo in reply to Gioc

"Thiamine always affects the central nervous system at any dose and form",

So are you saying taking 25mg is the same as taking 4000mg? Orally.

How do you account for those who notice no differrence taking B1?

How do you translate Despe's comment that "the jury is out"?

Gioc profile image
Gioc in reply to WinnieThePoo

1) No, but if it is thiamine mononitrate it could be sufficient according to this post.

(Please don't attribute your conclusions to me, that's not fair, I always accept constructive criticism. :-) ).

2) Is this your case?

3) As you know I don't have a good understanding of English idioms, sorry, (if you help me I am grateful).

WinnieThePoo profile image
WinnieThePoo in reply to Gioc

Hi Gio

Don't worry too much

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"

Gioc profile image
Gioc in reply to WinnieThePoo

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.

😜

Despe profile image
Despe in reply to WinnieThePoo

I never wrote he takes 25mg. He takes 4 of those am and 4 pm, total 200mg/d.

WinnieThePoo profile image
WinnieThePoo in reply to Despe

Thank you for clarifying. Are they working? What benefits does he get from the B1 he takes?

Gioc profile image
Gioc in reply to WinnieThePoo

Wtp

Despe has written all his story many times, the last 20 days ago, but you still don't know it?

Once more nothing will change.

WinnieThePoo profile image
WinnieThePoo in reply to Gioc

Save me looking it up gio

Same questions

Gioc profile image
Gioc in reply to WinnieThePoo

🙄

WinnieThePoo profile image
WinnieThePoo in reply to Gioc

Stop playing the geisha Gio. This is a forum for sharing information and I asked straightforward questions of Despe

Gioc profile image
Gioc in reply to WinnieThePoo

If you do not want others to intervene I recommend that you use private messages. 😜

WinnieThePoo profile image
WinnieThePoo in reply to Gioc

It's a forum Gio. And not owned by you. Just mind your own business and confine any contributions to constructive ones

Gioc profile image
Gioc in reply to WinnieThePoo

Wtp , trying to silence others like you are trying to do with me right now doesn't seem very constructive.

WinnieThePoo profile image
WinnieThePoo in reply to Gioc

Grow up

Gioc profile image
Gioc in reply to WinnieThePoo

Winnie the Poo,

Sure, but you stop watching cartoons from 100 years ago. With an avatar like yours you can't give lessons about growing up.. 😁

WinnieThePoo profile image
WinnieThePoo in reply to Gioc

I appreciate you have latin blood but if you must play the prima donna, learn to sing a top C.

Despe profile image
Despe in reply to Gioc

Thanks, Gio. :) He did restart Niacin, he feels better when he takes it, just that he doesn't like the flushing.

Despe profile image
Despe in reply to WinnieThePoo

More benefits than Sinemet! :)

WinnieThePoo profile image
WinnieThePoo in reply to Despe

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)

Despe profile image
Despe in reply to WinnieThePoo

Lets agree that we disagree, WTP. I interpret it differently, plus HCL doesn't affect kidneys or liver.

Jacstar3 profile image
Jacstar3 in reply to WinnieThePoo

There’s always one (again)

AmmieM profile image
AmmieM

I take generic sinemet first thing in the morning with water. How long after that would you recommend I take the sublingual?

Dap1948 profile image
Dap1948 in reply to AmmieM

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

Coot18 profile image
Coot18

I take my 50/200 Sinemet sublingual. I swallow B1 and Mucuna Purines

Dap1948 profile image
Dap1948 in reply to Coot18

Do they make a version of Sinemet which works sublingually and passes through the skin into the bloodstream?

jeeves19 profile image
jeeves19

The link you posted Daffers says none available 😕🤔

Dap1948 profile image
Dap1948 in reply to jeeves19

They’re always going out of stock which is one of the problems with them. Guess I’ve caused a run on them!

BlueHawaii profile image
BlueHawaii

Thank you so much for sharing!

stuartj profile image
stuartj

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

Dap1948 profile image
Dap1948 in reply to stuartj

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...

bassofspades profile image
bassofspades

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.

Thanks!

Dap1948 profile image
Dap1948 in reply to bassofspades

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.

Good luck

bassofspades profile image
bassofspades in reply to Dap1948

I ordered some along with your book. Thanks friend!

Dap1948 profile image
Dap1948 in reply to bassofspades

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?

bassofspades profile image
bassofspades in reply to Dap1948

Yes that's a great idea

bassofspades profile image
bassofspades in reply to bassofspades

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.

chartist profile image
chartist in reply to bassofspades

bass,

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.

Art

bassofspades profile image
bassofspades in reply to chartist

Yes. Significantly better.

chartist profile image
chartist in reply to bassofspades

bass,

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.

Art

bassofspades profile image
bassofspades in reply to chartist

Yes, im getting better results with 1/140th of the weekly dosage by using the sublingual

chartist profile image
chartist in reply to bassofspades

Are you using this product :

vitaminlife.com/products/vi...

Art

bassofspades profile image
bassofspades in reply to chartist

Yes, that's the stuff

gaga1958 profile image
gaga1958 in reply to bassofspades

bassofspades, which brand do you use? and what is your opinion of the taste? thxs

bassofspades profile image
bassofspades in reply to gaga1958

This brand or whatever is cheapest. Tastes terrible. .vitaminlife.com/products/vi...

Dap1948 profile image
Dap1948 in reply to bassofspades

You do get used to it. I describe it as ‘bitter liquorice’ taste!

bassofspades profile image
bassofspades in reply to bassofspades

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.

Dap1948 profile image
Dap1948 in reply to bassofspades

I’m currently taking 3x 25mg (A quarter of a tablet) a week. A tub of tablets is lasting two years!

JAS9 profile image
JAS9

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.

ezmelts.com/products/vitami...

Dap1948 profile image
Dap1948 in reply to JAS9

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.

JAS9 profile image
JAS9 in reply to Dap1948

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.

Dap1948 profile image
Dap1948 in reply to JAS9

It says sublingual in the blurb. Mind you ‘Superior Source tablets that I’ve taken for five years doesn’t say sublingual on the tub either!

gaga1958 profile image
gaga1958 in reply to Dap1948

25mg is a long way from the 500mg caps. how would you guesstimate a dose to begin with?

Dap1948 profile image
Dap1948 in reply to gaga1958

500mg is an oral dose. Sublingual doses are tiny in comparison.

gaga1958 profile image
gaga1958 in reply to Dap1948

Right. But where would you begin a dose with it?

Dap1948 profile image
Dap1948 in reply to gaga1958

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…

JAS9 profile image
JAS9 in reply to Dap1948

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.

Gioc profile image
Gioc in reply to JAS9

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:

they are not absorbed by the oral mucosa;

do not quickly dissolve in the mouth;

have an unpleasant taste;

are irritating to the oral mucosas”

m.my-personaltrainer.it/far...

Dap1948 profile image
Dap1948 in reply to JAS9

Excellent, excellent. You have given me the firm evidence that I can now pass on to my Facebook group.

gaga1958 profile image
gaga1958 in reply to Dap1948

so will you be using the EZ melt form?

Dap1948 profile image
Dap1948 in reply to gaga1958

I will be continuing with Superior Source sublingual tablets which has served me very well for five years so far.

gaga1958 profile image
gaga1958 in reply to JAS9

is there any info about how they taste?

ghoegap profile image
ghoegap

Hi all , I have been in touch with ez melts and they mailed me to say they use Thiamine HCL

Dap1948 profile image
Dap1948 in reply to ghoegap

So it’s ‘safe’ to swallow in large doses but at 25mg a tablet, even a starter dose of 500mg would need 20 tablets. So expensive!

gaga1958 profile image
gaga1958 in reply to Dap1948

Dap1948 in reply to gaga1958

1 day ago

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…

ghoegap profile image
ghoegap

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

Dap1948 profile image
Dap1948 in reply to ghoegap

Try this place pureformulas.com/no-shot-b-...

They are sublingual.

You might be interested in my book to answer all your questions and much more or join my Facebook group

facebook.com/groups/parkins...

I’m sorry I can’t be more helpful but it’s a big question. If it had a quick and easy answer I wouldn’t have needed to write the book!

ghoegap profile image
ghoegap in reply to Dap1948

Thanks, will do

Gioc profile image
Gioc in reply to ghoegap

purebulk.com/products/thiam...

ghoegap profile image
ghoegap in reply to Gioc

thanks, appreciated

JMSL profile image
JMSL

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?

JMSL profile image
JMSL in reply to JMSL

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.

Dap1948 profile image
Dap1948 in reply to JMSL

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.

gaga1958 profile image
gaga1958 in reply to Dap1948

To you have the sublingual B1 company info? I do not have a Facebook acct to look.

Dap1948 profile image
Dap1948 in reply to gaga1958

pureformulas.com/no-shot-b-...

gaga1958 profile image
gaga1958

Sorry meant Do you….

fel3k profile image
fel3k

Thanks so much for your input and your book. I’m praying my husband will get results.

Dap1948 profile image
Dap1948 in reply to fel3k

Contact me if you’re finding it hard to find the right dose.

fel3k profile image
fel3k

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!!

Dap1948 profile image
Dap1948 in reply to fel3k

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

fel3k profile image
fel3k

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..

Dap1948 profile image
Dap1948 in reply to fel3k

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

Ioseph profile image
Ioseph

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!

Dap1948 profile image
Dap1948 in reply to Ioseph

I’m sorry there is no equivalent sublingual product. Oral thiamine produces the same good results when your right dose is found.

Ioseph profile image
Ioseph

Thanks Daphne. That is so kind of you. I’ve found the Ez Melts tablet but it us just 25mg and it would take 4 doses to get to 100mg :-/

Dap1948 profile image
Dap1948 in reply to Ioseph

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!!

chartist profile image
chartist in reply to Dap1948

Daphne,

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.

Art

Superior Source Ingredients.
Dap1948 profile image
Dap1948 in reply to chartist

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.

chartist profile image
chartist in reply to Dap1948

I'm sorry, Daphne,

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.

Art

Dap1948 profile image
Dap1948 in reply to chartist

…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.

chartist profile image
chartist in reply to Dap1948

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.

Art

Dap1948 profile image
Dap1948 in reply to chartist

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….

Have I been clearer?!

chartist profile image
chartist in reply to Dap1948

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.

Art

Dap1948 profile image
Dap1948 in reply to chartist

ok!

Likii profile image
Likii in reply to chartist

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:

Absorption Of Drugs Across The Oral Mucosa

europeanmedical.info/drug-d...

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.

eurekamag.com/research/001/...

chartist profile image
chartist in reply to Likii

I have tried the thiamine HCI and it is way too bitter by itself for sublingual use.

Art

rsacdoolittle profile image
rsacdoolittle in reply to chartist

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.

Ioseph profile image
Ioseph

Thanks so much!

Ioseph profile image
Ioseph

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.

Dap1948 profile image
Dap1948 in reply to Ioseph

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.

Ioseph profile image
Ioseph

For example, what about this? akalo.co/products/akalo-b1-...

It says it avoid the digestive tract. My only concern is whether it will be equivalent to the 100mg sublingual solution.

This was helpful, Daphne. Thank you.

Ioseph profile image
Ioseph

or this one with higher dose and more affordable usanaturalpatches.com/produ...

Gigi_12 profile image
Gigi_12

Can you take half a pill? I have taken 1 pill daily and feel weaker and more fatigued and wonder if I am overdosing.

Dap1948 profile image
Dap1948 in reply to Gigi_12

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.

Gigi_12 profile image
Gigi_12

Thank you so very much. I have your book which is a wonderful wealth of information. I'll try 1 every other day and see how that goes.

fxrm profile image
fxrm

Hi Daphne,

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?

Thank you.

Frank

Dap1948 profile image
Dap1948 in reply to fxrm

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...

fxrm profile image
fxrm in reply to Dap1948

Thank you very much for the reply. I do not have a face book account. let me think about it.

Kiryn profile image
Kiryn

I’ve been trying to order these for shipment to the UK . I get as far as paying for it and can’t proceed any further. Any suggestions?

Dap1948 profile image
Dap1948 in reply to Kiryn

sorry, I can’t help! I’ve never had any problem.

CaseyInsights profile image
CaseyInsights in reply to Kiryn

I live outside the USA and find ordering from Amazon USA a breeze. They ship worldwide.

amazon.com/gp/product/B004X...

Have a go 💥

gomelgo profile image
gomelgo

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.

Dap1948 profile image
Dap1948 in reply to gomelgo

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.

uk.iherb.com/pr/source-natu...

(I’m dairy intolerant and have never had any problem with superior source. The milk content is minuscule.)

gomelgo profile image
gomelgo in reply to Dap1948

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?

Dap1948 profile image
Dap1948 in reply to gomelgo

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.

gomelgo profile image
gomelgo in reply to Dap1948

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.

Dap1948 profile image
Dap1948 in reply to gomelgo

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.

gomelgo profile image
gomelgo in reply to Dap1948

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.

Rosieskeeper profile image
Rosieskeeper

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

Dap1948 profile image
Dap1948 in reply to Rosieskeeper

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.

Butterflygrandma profile image
Butterflygrandma

How did you know to decrease your dosage ? What symptoms were you getting ?

Dap1948 profile image
Dap1948

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.

Likii profile image
Likii

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:

Density (D) 0.414 g/cm³

carlroth.com/com/en/vitamin...

And 1 tsp actually = 4.9 ml.

=> 4.9 ml/tsp x 414 mg/ml = 2,000 mg/tsp = 2 g/tsp. Similar to my first estimate.

Now to try the dose often used in Daphne's 'sublingual' protocol - 100 mg:

100 mg pure thiamine HCl powder = 1/20 tsp (0.25 ml).

There are tiny measuring spoons available to measure this or you can divide 1/4 tsp into 5 equal portions.

Or you can do as chartist suggested: use a sensitive scale to weigh the thiamine HCl powder.

iznogood profile image
iznogood

Hi Dap

Thank you very much for your post and comments.

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

Best regards

Claus

Dap1948 profile image
Dap1948 in reply to iznogood

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 hope this is of help

Reetpetitio profile image
Reetpetitio

Hi Daphne, could you be so kind as to let me know your opinion of this B1? (I'm in the UK).

Thank you, Sarita

amazon.co.uk/Vitamin-Thiami...

Dap1948 profile image
Dap1948 in reply to Reetpetitio

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.

Davidecek profile image
Davidecek

Thank you for your detailed explanation. This is the first time my husband star B1 protocol.

Et123456 profile image
Et123456

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!

Dap1948 profile image
Dap1948 in reply to Et123456

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.

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