What is TTFD (thiamine tetrahydrofurfuryl... - Cure Parkinson's

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What is TTFD (thiamine tetrahydrofurfuryl disulfide)

MarionP profile image
41 Replies

What is TTFD (thiamine tetrahydrofurfuryl disulfide) and is it ethically (actually/likely is what the manufacturer says it is) available?

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MarionP profile image
MarionP
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rescuema profile image
rescuema

Hi Marion,

I'm sure you saw these links but posting for others.

ncbi.nlm.nih.gov/pubmed/153...

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

hormonesmatter.com/ttfd-thi...

I take the ones available from Ecological Formulas. When I take Allithaimine, I smell synthetic plastic/sulfur-ish odor, which is what you'd notice with mercaptan as TTFD metabolizes. Allithaimine and Lipothiamine are the TTFD products recommended by Dr. Lonsdale.

MarionP profile image
MarionP in reply torescuema

Very good, thanks for me and everybody else who want to look into

rebtar profile image
rebtar

How would you compare the benefits of allithiamine vs lipothiamine vs thiamine hcl?

rescuema profile image
rescuema in reply torebtar

I'd say Allithiamine and Lipothiamine work about the same for me. They both contain 50mg TTFD per pill. I notice the sulfurish smell more with Allithiamine probably because it metabolizes quicker without enteric coating. Some people may have issues with the extra fillers used in Allithaimine, so if you're sensitive to such or have problem swallowing pills, go with Lipothiamine (enteric coated with a bit of ALA) instead that's about 1/6 in size.

I've heard other manufacturers were working on releasing additional cleaner TTFD formulations soon. I just noticed a brand new one by "monoHerb" on Amazon and the label looks good but I'm going to pass for now since I don't know anything about the manufacturer.

I actually noticed tremendous benefit with Benfotiamine (also doesn't require thiamine transporters) before even trying Allithiamine/Lipothiamine. At one point I combined both Befo and Allithiamine at high dosage and felt great. However, I had to eventually lay off on the dosage when I started noticing B1 overdose symptoms, such as diarrhea, rash, back pain, etc. - all the problems you'd notice with methylation imbalance along with other B vitamins deficiencies (compete in absorption).

I've been taking only one 50mg per day of TTFD for a while and have not noticed any setback. For anyone who experience trouble getting the dosage right, especially with B1 hcl (requires transporters, or very high dosage needed for passive diffusion), then try TTFD instead, especially to get the B1 into the brain.

rebtar profile image
rebtar in reply torescuema

Thank you! I used HCl fir almost a year, starting with a high dose. At the end I was having back pain and no matter how low I went on the dose, it would come back. You say this can be a methylation imbalance, could you explain this?

rescuema profile image
rescuema in reply torebtar

Here you go.

healthunlocked.com/parkinso...

rebtar profile image
rebtar in reply torescuema

I remember this post. I didn’t understand it the first time either! I get that you’re saying an imbalance in nutrients, or deficiency in nutrients required for methylation can cause these symptoms when taking B1. What’s not clear to me is what to do about it, other than trying allithiamine or lipothiamine and if symptoms re-emerge, experiment with dosage.

rescuema profile image
rescuema in reply torebtar

Yes, lower the B1 dosage until you find a relief or try TTFD at 50mg (along with supporting nutrients, such as Mg, other B-complex, etc). Without running a thorough blood panel to identify possible nutrient deficiencies and your genetic predisposition (SNPs) or know biomarkers such as SAM, SAH, homocysteine, methionine, etc, it's tough to guess what an individual may need. If you're an undermethylator lacking methyl donors, you may try supplementing SAM-e, Creatine or TMG to see if that lowers your homocysteine that contributes to inflammation. It's also possible that you're simply deficient in b6, b9 (MTHFR) or b12 causing a jam in the homocysteine->methionine conversion for remethylation - this btw is not uncommon for PWP on l-dopa meds. You could also be deficient in zinc, which is a cofactor for the enzyme to cycle homocysteine back to methionine.

I found this methylation panel online and I personally can't vouch for it, but it is one of the popular options you could try.

secondopinionphysician.com/...

rebtar profile image
rebtar in reply torescuema

Doctors Data is good. I take a 1mg MTHFR sup based on genetic panel. I take a mineral sup incl zinc and i take magnesium. I know my homocysteine is OK but I have other elevated inflammation markers. I take a b complex. I guess I'll try the Allithiamine to see what result I get. And take the question back to my dic who's done the testing next appt. to see what she suggests.

rescuema profile image
rescuema in reply torebtar

It looks like you’re way ahead compared to many. The question is what happens to your homocysteine when you’re on high B1 (what gets backed up?) and what’s “OK” - it depends on a person but for many it should be a single digit. Try experimenting with TMG after trying TTFD first. It’s inexpensive and a way to help bypass the sluggish folate cycle especially while MTHFR compromised. I don’t know your b6 status but also may be beneficial to add a sublingual P5P (Cut to smaller dose) away from your meds.

rebtar profile image
rebtar in reply torescuema

Thanks for the suggestions.

in reply torescuema

neurohacker.com/benefits-of...

Good explanation of P5P

M-o-ggy profile image
M-o-ggy in reply torescuema

Hi there. Would you tell more about ‘what gets backed up). I’m afariad tha5 I don’t understand.

rescuema profile image
rescuema in reply toM-o-ggy

hi Moggy, I tried to explain on the shared link a few responses above years ago. Here’s the post link again. However I suggest you Google methylation and understand the basics first since the topic is complex. Just remember that whenever you ramp up a metabolic cycle (as in HD B1 use), you may exhaust cofactor nutrients that ultimately may also eventually cause a buildup of other nutrients that get out of balance. I also suggest you monitor your trend through the use of HTMA to continually balance your minerals.

healthunlocked.com/parkinso...

M-o-ggy profile image
M-o-ggy in reply torescuema

What is HTMA?

rescuema profile image
rescuema in reply toM-o-ggy

Hair Tissue Mineral Analysis. I do this at least annually to monitor my mineral trend. Reading the results can be tricky but it's one of the best tools for monitoring your mineral state.

evenbetternow.com/proddetai...

EDIT: opps sorry, I just noticced you're in UK. I suggest you seek out a naturopath for HTMA near where you live.

M-o-ggy profile image
M-o-ggy in reply torescuema

Thank you for this. It is a very good idea. I have been wondering on ways to check on whatI am doing.

At the moment I take high doses ofB1 and have been for a while.

I stopped taking it for a week before my specialist appointment and within days developed a very interesting habit of trying to fall over when I was looking forward and down.

Since then I have resumed the B1 HSL. The balance has improved but is still there when I stop consciously thinking about what I am physically doing.

I appreciate that being able to apply conscious thought is a skill but the more I apply it, the more I frown and give the impression of being distant and grumpy Guess I can’t do everything

Interestingly since I stared this dosage the scabby wart on my thumb joint has reduced. It’s area seems to be the same but the height is reduced and it still turns bright red if I eat/ drink sugar.

The largish lump on my lower iside forearm and lump on my Brest Bone have disappeared

Sorry. I have drifted off topic. Will look for somewhere to have HTMA

dadcor profile image
dadcor in reply torescuema

What was the dose of Benfotiamine you did use before Alli/Lipo..?

rescuema profile image
rescuema in reply todadcor

Dr's Best 300mg is what I started with up to 3 times a day, but titrated down. Now I take DB 150mg+ALAamazon.com/gp/product/B009P...

Whenever I take Benfotiamine, I notice my fasting blood glucose drop so it'd be beneficial to monitor your glucose level, but it generally improves insulin sensitivity.

RoyProp who championed HDT Facebook group actually started with Benfotiamine himself along with Alithiamine to notice benefits for his PD, but later switched to HD B1 HCL while being monitored by Dr. Constantini.

"I started w 250mg mega-benfo plus 50mg alli good results. That 2x day. That happened months ago. I moved to thiamin hcl on advice of Doc Costantini, and expect improvement above and beyond...Replaced 600mg a day benfo and alli with 4 g day thiamine HCl per Doc Costantini's advice...In six weeks or less if I do not experience great improvement I will switch back to Mega-Benfotiamine. That was what I first used that resulted in vast improvement of my condition....." healthunlocked.com/parkinso...

Trailing profile image
Trailing in reply torescuema

I'm confused when it comes to high dose B1. Why did you mention Roy Prop? What method did he end up with?

At one time I started my husband who has Parkinson's on high dose Thiamine HCI. We didn't notice change at the time and did not continue it. To be honest I can't remember as so much has happened since then.

Presently he has an old knee injury that has been bothering him and preventing him from getting as much exercise as he previously was able to do. He may have knee surgery down the road.

But he seems to be fatigued and lacks energy. So I was reconsidering that B1 might help him. I thought Alithiamine was the natural form and therefore better than Benfotiamine. Why did you choose to take the Benfotiamine?

From some of your other post we seem to be on the same page so I'd appreciate your opinion.

rescuema profile image
rescuema in reply toTrailing

Hi Trailing,

If your husband tried HDT alone to no effect, then it's possible one of the reasons may be that he is deficient/blocked in other co-factors. I would add magnesium, zinc/copper (as in Jarrow's Zinc Balance), a good B-complex (separated dose), and a multivitamin at the very least along with potassium-rich foods. Watch this video to see what your husband may be missing. youtu.be/-DxvSUEVT_4

I initially chose Benfotiamine after extensive research, including the study below.

pubmed.ncbi.nlm.nih.gov/203...

It also helps to gauge the myriad reviews online, both positive and negative.

amazon.com/Doctors-Best-Ben...

Benfotiamine is actually less toxic and extremely bioavailable over other thiamine forms. I later tried TTFD with Dr. Lonsdale's clinical findings but noticed it had subtle different effects from Benfo but it didn't help with blood sugar regulation, which is why I combine/alternate both periodically.

Trailing profile image
Trailing in reply torescuema

Thanks so much Rescuema. Elliot Overtone's You Tube is what convinced us before and we need to watch it again. We basically got off track with the COVID so called pandemic. He does take all those supplements and added more zinc since COVID. Also he has always taken CALM magnesium plus Bone Renewal Cal/Mag but I got him to add Magnesium L-Theronate which crosses the brain barrier. Thanks again, you were very helpful.

rescuema profile image
rescuema in reply toTrailing

You're welcome and I'm glad I was of help. High-dose B1 supplementation can be a pretty tricky art, and you have to be extra careful not to go deficient in other nutrients while overdosing it. In my case, I definitely noticed gradual deficiencies in potassium and also B2, so I make sure I supplement high dose B2 separately to help with methylation along with other nutrients. Also, be cognizant to balance Cu to Zn ratio - read my brief writeup about it below. healthunlocked.com/cure-par...

in reply torescuema

I just recently discovered TTFD after having taken Benfotiamine for about a year. When I learned that Rescuema takes TTFD personally, that really validates the trails I wind down to learn of these things! And, there is a new one without fillers that I’m interested in and you might be as well.

🌸 Novice Newbie Neuro Researcher 😊

TTFD new source , I believe EO Nutrition is behind it.
rescuema profile image
rescuema in reply to

Yes I'm aware of his TTFD and he talked about the release a while back. Though $0.50 per pill seems pretty stiff, albeit at a 100mg dose - still seems an option for people sensitive to fillers.

in reply torescuema

Oh Rescuema! ☺️ I had a giggle when I read that because of course you know if it and to top that you know of the price per pill. Someday Rescuema, someday, I will be able to reciprocate with more than just appreciation. 🌸 Novice Newbie

MarionP profile image
MarionP in reply to

Well you are on the right track with this. By the way I have a small bibliography that may help you understand about methylation if you like, to really get the idea you sort of do need to like to read, and enjoy tackling such basic simplicities as biochemistry and organic chemistry, but it's fun nevertheless.

MarionP profile image
MarionP

I have noticed a zinc/copper combo pill from Solaray, using

53 mcg iodine from kelp

50mg zinc from what they call a chelate complex amino acid

2 mg copper, again amino acid chelate complex

I think these may be in the right proportions but if anyone wants to advise, please do. Meanwhile, we'll be taking these as long as we can get them.

rescuema profile image
rescuema in reply toMarionP

hi Marion. I just noticed this post while answering another. No, that is not balanced and when you take high zinc regularly over much lower Cu, you will cause bioavailable copper deficiency. Be sure to cut down on zinc or raise Cu so that the ratio is around 8 to 1, although this largely depends on individual. I would actually separate copper if possible from other supplements by at least 2 hours since its absorption can get blocked by zinc, iron, molybdenum, selenium, etc, etc. Also try cod liver oil with natural retinol content and supplement that with Cu depending on your diet.

Gcf51 profile image
Gcf51

A google shopping search for thiamine tetrahydrofurfuryl disulfide reveals many B1 vitamins but nothing that I am 100% sure is TTFD. Is it Allithiamine? Where can I buy?

rescuema profile image
rescuema in reply toGcf51

Ecological Formulas Allithiamine is the most well-known brand recommended by Dr. Lonsdale, and it was the only reliable TTFD for a while. You probably could opt for the newer filler-free option Thiamax as posted above as well.

Gcf51 profile image
Gcf51 in reply torescuema

what dose do you take and/or what dose is recommended?

rescuema profile image
rescuema in reply toGcf51

Please see my relevant reply above to Trailing. I'd recommend a slower and safer method of 50mg TTFD, although many people (including myself) started with a much higher dose of a few hundred mg to kick start, but then you must be careful of the "paradoxical reactions" mentioned by Dr. Lonsdale. I've personally come to my own conclusion that the paradoxical worsening of symptoms won't resolve unless you identify a new rate-limiting factor or ensued deficiencies although you may feel great initially.

"I always warned the patient before administration. However, the paradoxical worsening of symptoms may last as long as a month when vitamin therapy is used in oral administration. I have always told the patient that paradox is the best sign of ultimate improvement."

hormonesmatter.com/refeedin...

Gcf51 profile image
Gcf51

Conclusion: Our results show that, though benfotiamine strongly increases thiamine levels in blood and liver, it has no significant effect in the brain... Benfotiamine, an S-acyl derivative practically insoluble in organic solvents, should therefore be differentiated from truly lipid-soluble thiamine disulfide derivatives (allithiamine and the synthetic sulbutiamine and fursultiamine) with a different mechanism of absorption and different pharmacological properties. medscape.com/viewarticle/58...

I just received my order of allithiamine (TTFD) and took my first (1) 50mg cap, Maybe placebo effect, but I feel a difference. Probably not going to take anymore benfotiamine. Could also be, I spent 4 hours yesterday and 5 today clearing a 6ft wide area behind my backyard fence (Exercise).

in reply toGcf51

I have ordered it as well. I bought Thiamax. Are you still trying NMN?

I am resuming NMN after my bottle of NR. I have ordered it from Do Not Age although this company looks like it might be reputable as well.

I use their trans Resveratrol powder.

NMN
Gcf51 profile image
Gcf51 in reply to

I'm still taking NMN

Gcf51 profile image
Gcf51

The TFD component of TTFD requires a Methyl donor. "....by using up SAM-e, TTFD could also theoretically increase the requirement for some of the other nutrients involved in the methylation cycle. These might include the B complex vitamins, particularly folate, riboflavin and vitamin B12." hormonesmatter.com/paradoxi... When T enterers a cell, TFD is shead and must be methylated.

So if you feel worst take something to increase methylation.

MarionP profile image
MarionP in reply toGcf51

"take something to increase methylation" ?????

Gcf51 profile image
Gcf51

Only day 2 and can't rule out Placebo... Please see and read my latest post healthunlocked.com/cure-par...

MarionP profile image
MarionP in reply toGcf51

Ok will do. Many thanks

Gcf51 profile image
Gcf51

I am certain that the prescription drug Alinamin F that I ordered from Japan is. It is Fursultiamine (another name for TTFD) as fursultiamine hydrochloride. The hcl comes off during digestion leaving the active ingredient TTFD for use in the body.

healthunlocked.com/cure-par....

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