Reasons for using Thiamine Hcl vs TTFDs?

[FarNorthSolitude]

I was diagnosed with "Neuropathy from unknown causes" back in 2002. It started in my feet (coldness, loss of feeling, cramps, stiffness) then over the years worked up to my calves, with severe cramps, then thighs and even my biceps got involved (squeeze the bicep, get a cramp). I started having a gait issue occasionally with a foot drop. Overall my legs got extremely stiff. Muscles felt like piano wires and no amount of stretching helped. I also had acid reflux issues on and off. I used to love lifting weights but stopped as instead of soreness then recovery with more strength, lifting seem to cause soreness that just increased no matter how long I spaced out between sessions.

In the last couple of years I started to have frequent stumbles which progressed to several serious falls last year. Luckily I avoided serious injury. My diagnosis hasn't been changed nor looked at since 2002, but to be fair, when rushing through the last appointment with my Dr. I forget to mention the stumbling and falling as a new symptom. There seems to be a genetic factor at play as my father suffered from stiff legs and walking issue and neuropathy and both brothers are having similar issues as well and an Aunt had PD.

I ran across the work of Dr. Lansdale with thiamine and have started high dose of the TTFD form of thiamine (allithiamine and lipothiamine) about 100mg 3x a day. I saw a quick resolution of the stumbling and falling issue, my balance has been fantastic, a reduction in muscle pain throughout my body, acid reflux vanished, and a big improvement in cramping in thighs and calves. I also have tinnitus and haven't seem much change there, it comes and goes.

My question is that there seems to be a preference to using very high doses of Thiamine HCL in the posts here vs the TTFD forms (subthiamine, lipothiamine, allithiamine) and I was wondering if there is any reasons or experience as to why that is the better form?

[Gioc]

In the case of PD, the BBB could make the difference, but I know well. Perhaps L. Bettendorf who is one of the top experts on Thiamine could answer.

researchgate.net/publicatio...

[Icequeen10]

I also have a nasty neuropathy of feet ankles. and lower legs. I take 500mg of magnesium 3 times a day with good results..I tried hi dose B1 and find that I can only take 100mg at 9am. and 100at 2pm. Any more and I feel ill and jittery.

[FarNorthSolitude in reply to Icequeen10]

I have been taking 350 mg of magnesium a day when I remember. I'll up that and see if it helps. Per DNA I am comt met/met which means I make only about 30% of the enzyme that processes catecholamines so I have to be careful of stimulants. I also seem to have some issue with methy's and high levels of methy's in food or supplements can induce anxiety and even panic attacks. So far tho, the high dose B1 has been fine for me.

[Juliegrace]

I started on 100mg allithiamine daily and had quite a good response. I took it while waiting to get my prescription for injectable thiamine HCL.

[Despe in reply to Juliegrace]

Hi Julie! I think it works for my husband, too. He told me today that he feels more "normal." He hasn't finished the bottle yet, pretty soon though.

[genesurf]

I also had neuropathy or paresthesia that was helped greatly by Allithiamine. Initially I took 2 capsules three times a day (I took a 100mg dose whenever the tingling came back), but eventually needed just one capsule daily.

I'd tried many things over the years to fix my tingling and fatigue, which started in my late 30s. A neurologist checked me for a brain tumor and MS, then told me that most cases of paresthesia are idiopathic, where they can't identify a cause.

After many years of experimenting, I found three things that helped: Allithiamine, potassium (1/8 t potassium chloride in water when fatigue hit), and B12 sublinguals. Last year I found my holy grail: injectable B12. Now I self-inject B12 (hydroxycobalamin), 1 mg every four days. My tingling and fatigue have gradually lessened, and now they usually aren't a problem for me.

I still take Allithiamine and potassium on an as-needed basis. I also take a large number of other supplements, but none help me immediately the way Allithiamine, potassium, and B12 do.

Pernicious anemia tests indicate that I probably don't have PA, and B12-deficiency blood tests (MMA, B12) were fine before the injections. So, I don't know why B12, Allithiamine, and potassium work for me, but I'm happy to have found them.

I have a close relative with suspected PD, so perhaps it's all related.

If anyone has any ideas, I'd love to hear them. I do have genetic data I can check, but all the obvious genes on the B12 and thiamine pathways look okay.

p.s. like the original poster FarNorthSolitude, I also have had reflux and some tinnitus in the past, but am doing better now.

[IowaNice]

youtu.be/RFZUzS_xP9A(Not working as expected?)

Great teaching on B1 and TTFD!