The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Is absorption of transdermal thiamine comparable to injection?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by annabettina, Oct 26, 2016.

  1. annabettina

    annabettina

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    Hi all...

    Been reading about thiamine for dysautonomia, neuropathy, and anxiety. Reading about Benfotiamine, too.

    Research says one can't absorb much thiamine from the intestinal tract if over 40 (am 58), but results of studies indicate that thiamine via injection appears effective.

    Question: is transdermal delivery comparable to injection?

    Part of my reading included transdermal delivery of Benfotiamine, but I don't yet have the full article, only the abstract. Does anyone know how to make a thiamine and Benfotiamine transdermal?

    Back to intestinal absorption of thiamine...

    Intestinal ALP is required, and one article said that age is associated with lower intestinal ALP, the intestinal mucosa not that of a twenty-year-old. I'd like to increase intestinal ALP....metabolic panel which measures ALP from all sources--liver, bone, intestinal--is low...and that's ALP from all sources--most people wrongly think that their ALP is only reflecting liver. I realize that first and foremost I need a healthy intestinal mucosa (have recently gone gluten-free, take NAG, probiotics, etc...btw, don't have Celiac or IBS), but is there anyway to increase intestinal ALP itself? Have recently been hypothyroid (medicine removed my gland via I131 when I was only twenty...have been on replacement, mostly Synthroid, ever since) and know that low thyroid is often associated with low ALP.

    TIA....
     
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  2. annabettina

    annabettina

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    Meant to add...

    Now on lower dose of T4 but with T3 added, the metabolically far more active hormone. Don't agree with the idea of going on only T3 as some advocate saying that T3 is the end-all, be-all, that T4 is just a storage hormone. Enough research to show that T4, although definitely less potent than T3, has Intrinsic non genomic roles that only it can do.
     
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  3. skwag

    skwag Senior Member

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    Have you tried allithiamine? This fat soluble form is supposed to be better absorbed than thiamine. Not sure whether that would get around the ALP issue or not. I'm still not exactly sure where benfotiamine fits in. Do you have a link to the abstract discussing the transdermal benfotiamine?

    If you are interested allithiamine, it can be found on Amazon.
     
    Last edited: Oct 27, 2016
  4. Sidereal

    Sidereal Senior Member

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    Transdermal allithiamine is the most effective intervention I have found for my ME/CFS. Noticeable increase in energy and cognitive clarity within 15-20 mins. I open the capsules and mix them with hand lotion and apply to skin. It's really messy and smelly but it works. Swallowing any form of thiamine - and I've tried them all - has little to no effect.
     
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  5. skwag

    skwag Senior Member

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    @Sidereal, have you ever had a thiamine injection or IV? I'm curious, like the OP, how that would compare to the transdermal allithiamine.
     
  6. Sidereal

    Sidereal Senior Member

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    Nope.
     
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  7. rosie26

    rosie26 Senior Member

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    @Sidereal Which is the best quality allithiamine to buy, if there is one ? Which one do you take if you don't mind mentioning, thanks. I would like to try this transdermally.
     
  8. Sidereal

    Sidereal Senior Member

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    I stay away from B vitamin supplementation these days because the downsides are typically not worth it but when I was doing allithiamine I just got the brand on Amazon (there's only one IIRC), open the caps, mix with hand lotion and apply to the arm. Wash off 20 mins later after I felt it kick in. Warning: allithiamine, as you probably know, is derived from garlic. It smells and tastes absolutely horrendous.
     
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  9. Lolinda

    Lolinda after meals, I need to lay in bed for hours

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    I am very interested in others' transdermal thiamine experiences! Pls post more!
    @annabettina have you tried since?
    @Sidereal , how much allithiamine did you use? Apart from smell, did you get any "downsides" from thiamine?
    Anyone else?

    Good news: benfothiamine resorbs transdermally:
    Pharmacokinetics of the transdermal delivery of benfotiamine.
    https://www.ncbi.nlm.nih.gov/pubmed/26141141
    They used 10 mg of benfothiamine creme.

    I use almost all supplements transdermally to avoid gut issues. In my experience, water soluble vitamins resorb particularly well, fat soluble a little. Here and here some more experiences with other vitamins, minerals and aminos.

    Currently, I try simple thiamine powder in watery solution on the skin, 4 x 0.5 mg per day. If anyone is interested if this works, remind me in a 2 weeks, then I will receive my new thiamine test results, so we see if they improved.


    I corrobate the that there are issues:
    • I used one single time 75mg of B1 orally and it badly increased my neuropathy, I felt almost nothing in my soles. This is why I am now that careful to take such minimal doses as described above.
    • On google scholar, you find reports on patients who died from thiamine injections...
    Still, I started taking some thiamine, because I tested as deficient as in full-blown beri-beri and my symptoms match, too. I encourage testing before taking it. The valid test is: "red blood cell transketolase with TPP effect". My values:

    IMG_20170601_174314.jpg

    Here for comparison the values from a study on beri beri patients, having just the same transketolase TPP as me:

    IMG_20170525_012313.jpg

    The ordinary thiamine blood test is useful, but in a few people it is fine inspite of having a deficiency. So in me...

    IMG_20170604_130135.jpg

    More on thiamine, deficiency symptoms, etc here
     
    Last edited: Jun 4, 2017
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  10. Sidereal

    Sidereal Senior Member

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    Sorry for the belated reply, @Lolinda. I rarely check PR these days.

    I went as high as 300-400 mg per day. Transdermal was far more effective for me than oral administration. It's very energising. The downsides were similar to any other stimulant: a bit of agitation and/or anxiety at times, occasional anger, insomnia for the first few days.
     
  11. sb4

    sb4 Senior Member

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    It seems our paths cross again.

    I had started transdermal allithiamine about 1.5 weeks ago and have since noticed significant improvements in POTS symptoms, particularly after eating, way less heart pounding / racing. I read how thiamine helps autonomic system and gastric secretion, so now I started looking for other ways to increase hcl without betaine. I will try malic acid soon.

    I have noticed a slight worsening over the past2-3 days which I hope is not due to my b1 inducing other deficiencies. Have you been using b1?
     
  12. Lolinda

    Lolinda after meals, I need to lay in bed for hours

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    Yes! ...which resulted in a ton of posts scattered through various threads :).
    I write a summary for you (containing also the ones you have already seen, for completeness):

    Thiamine need depends on kcal eaten. So, better calculate thiamine need based on kcal intake:
    http://forums.phoenixrising.me/inde...thiamine-deficiency.24059/page-12#post-867532
    (this post also contains the best-ever WHO document on thiamine)

    arsenic causes the same symptoms as thiamine deficiency:
    http://forums.phoenixrising.me/inde...thiamine-deficiency.24059/page-13#post-879500

    alpha lipoic acid drains B1 and is dangerous on thiamine deficiency:
    http://forums.phoenixrising.me/inde...-alanine-methylation.50395/page-7#post-879101

    the most valid thiamine test, the transketolase TPP effect, is available through synlab:
    http://forums.phoenixrising.me/inde...thiamine-deficiency.24059/page-13#post-871204
    my perfectly fine values on the non-valid test, and my pathological values on the more valid test:
    http://forums.phoenixrising.me/inde...ne-comparable-to-injection.47588/#post-858086
    scientific validity of different thiamine tests:
    http://forums.phoenixrising.me/inde...thiamine-deficiency.24059/page-10#post-864546

    clostridia sporogenes causes thiamine deficiency - and how to test for those bugs:
    http://forums.phoenixrising.me/inde...thiamine-deficiency.24059/page-11#post-865975

    thiamine degrades AGEs and estrogens:
    http://forums.phoenixrising.me/inde...-alanine-methylation.50395/page-5#post-864815

    thiamine and stomach acid:
    http://forums.phoenixrising.me/inde...ith-low-stomach-acid.45191/page-4#post-862991

    seems like I tolerate only the RDA. At slightly higher doses, thiamine caused bad neuropathy in me (which it is supposed to cure...):
    http://forums.phoenixrising.me/inde...analysis-netherlands.50782/page-3#post-862859
    details on my previous horrible event when I suddenly lost feeling in feet because of 75mg thiamine:
    http://forums.phoenixrising.me/inde...n-feet-pain-tingling.45736/page-3#post-816945
    increasing blood flow helped against the thiamine-induced neuropathy:
    http://forums.phoenixrising.me/inde...analysis-netherlands.50782/page-3#post-861664

    beriberi essentials:
    http://forums.phoenixrising.me/inde...analysis-netherlands.50782/page-2#post-856704

    thiamine and thyroid:
    http://forums.phoenixrising.me/inde...thiamine-deficiency.24059/page-11#post-865277
     
    Last edited: Aug 12, 2017
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  13. sb4

    sb4 Senior Member

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    @Lolinda You have been busy. Thanks you very much for those posts. I have tried to read as much as I can but I have a few questions, sorry if you've already answered elsewhere.

    You said you only tolerate the RDA yet I remember elsewhere you saying high doses. How much are you taking? I understand that it's very individual.

    Are you talking other nutrients as well to avoid deficiencies?

    I have stopped the transdermal allithiamine for 2 days as I was getting insomnia, heart pounding was returning. I plan on restarting when I get a B-Complex, I will apply them both transdermally unless I find out this is not wise. I will also keep up my mag and k+.
     
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  14. Lolinda

    Lolinda after meals, I need to lay in bed for hours

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    I tried various dosages.
    • 75 mg oral ➞ 2x severe attacks of sudden neuropathy, lasting damage (less feeling in feet, tingling, burning)
    • 9 mg transdermal ➞ smaller attack of sudden neuropathy: feeling like leg sleeps away for days. I could prevent lasting damage by transdermal citrulline, which noticeably increased blood flow and lessened neuropathic pain
    • in all 3 sudden attacks of neuropathy, it came surprisingly when I ate canned mackerel after using B1 the day before. I ate the same mackerel a 100 times with no damage, and I ate other, freshly grilled fish after the B1 with no damage. 3 times this combo with 3 times damage.
    • Currently, I take B1 naturally and orally as 2g dry flakes of nutritional yeast per day. Yeast and all other food together make somewhat more than 1mg of B1, corresponding to somewhat more than 100% RDA.
    IMG_20170812_135050.jpg

    Other nutrients, all transdermally: loads of Mg-Cl, 300mg AGP-choline, 1mL glycine, 1-3g borage, rarely 250mg chrome. Orally, I take silymarin powder sprinkled on cooked meals.
    I am slightly low on my B2 an B3 intake, but hope to be able to improve this by food.
    In sum: As I do not take horse-doses of B1, I guess there should be no danger of causing deficiencies elsewhere. I measured B2 and found no deficiency, but such measurements are close to valueless, one needs functional tests which I did not do.
     
    Last edited: Aug 12, 2017
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  15. Gondwanaland

    Gondwanaland Senior Member

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    Could this be B2 deficiency? ( @Sidereal ?)
     
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  16. Learner1

    Learner1 Professional Patient

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    Some mackerel can have high mercury content which the B1 (in addition to other nutrients) could be interacting with, causing symptoms. What's actually happening would depend on the relative status of all the other nutrients in your detox pathways (like the B2 mentioned above).
     
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  17. Sidereal

    Sidereal Senior Member

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    I don't know.

    I had terrible peripheral neuropathy before B1. B1 initially worsened it (it was like being stabbed with multiple ice-picks at once) but gradually got rid of it completely after a few weeks.

    It might be that nerves hurt more when there is a sudden influx of the deficient nutrient and the repair starts. Or it could be more damage.
     
  18. Gondwanaland

    Gondwanaland Senior Member

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    B1 activates liver phase 1
     
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  19. JasonUT

    JasonUT Senior Member

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    I mentioned the same thing to my nutritionist. He said possible nerve repair. A google search for "thiamine myelin sheath" gives lots of results.
     
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  20. Lolinda

    Lolinda after meals, I need to lay in bed for hours

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    Hey @Gondwanaland @Sidereal @Learner1 @JasonUT
    I just want to thank for all your comments following the description of my experiences. You guys motivated me to dig until I found out how to do valid testing for B2. I posted all details on the B2 thread (in short: try hard to find a lab offering the EGRAC). In a week or two I will know my EGRAC results.

    Some more weeks and I will learn about my heavy metal issues...
    Btw, @Learner1 your comment about mercury makes sense to me: the other fish (which did not cause issues even on big B1 doses) was mini-sardines. Now sardines live so short that they do not have any time to accumulate mercury. 10cm small sardines doubly so. Mackerel arent big either, but bigger, and I guess they live longer, so have more time to collect mercury... or?

    Sounds tempting! Unfortunately, in me it was no sign of repair induced by B1: I had almost no neuropathy before, and got lasting probs from B1. But now on the 2g nutritional yeast I am well, no issues, and various nice benefits. My B1 levels (as measured by the transketolase TPP effect test) nicely returned to normal. It all just took longer. I do not need any horse doses ... I want safety. No more nightmares.
     
    Last edited: Aug 17, 2017
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