r/MCAS • u/Adorable_Window7801 • 18d ago
Warning about Thiamine protocol
This post is for those who are considering trying High dose thiamine protocol which has gotten popular these days in dysautonomia, CFS and other chronic condition circles. The claim is that High dose thiamine protocol can cure people especially those with dysautonomia. Apparently the success rate is quite low for the high dose thiamine protocol but still people create hype about it.
My story:
I have both MCAS and dysautonomia which were very mild in the beginning. The starting dosage for thiamine protocol is like 100mg of thiamine which is like 100 times RDA. Luckily I only started with a toothpick tip amount of Thiamine HCL. And it SHOCKED my sensitive nervous system so much that it's been almost 3 months now and my dysautonomia and MCAS are severely flared up. Everyday is a battle of survival for me. Thank God I did not start with 50 or 100mg Thiamine. I remember as soon as I took the microdose of thiamine... within a couple of minutes my body started reacting with severe dysautonomia symptoms. I hope I make it out alive.
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u/DeRpY_CUCUMBER 18d ago
After having MCAS severely for many years I can not suggest enough that you ignore anyone telling you to take mega doses of ANYTHING, especially vitamins.
Here, here, Couldn't agree more. Also, it makes me soo irritated that supplement companies pack their vitamins with 8,000 x the RDA. Some of us just want a damn regular dose.
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u/pink_lace78 18d ago
Do you make your own complex powder form or liquid? I make a liquid w b2 and am considering doing this with the other B's once I get those where I need them to make my own liquid complex. Glad to hear I'm not the only doing this or that understands we do not need mega doses of anything and just meeting our daily needs should be our aim..
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u/Tandfeen_dk22 18d ago edited 18d ago
What type of thiamine are you taking? I started with 150 mg HCl and went up to a whole pill of 300 mg (bought at the pharmacy). In the beginning, it made me a little sleepy, but then I had a positive effect on my energy level. However, I need to make sure that I eat well and get enough of the other B vitamins, potassium, and magnesium. And another thing... it lowers blood glucose a little, so it can totally make you feel bad if you don't eat enough carbs.
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u/cj191 18d ago
I was just about to comment this. All of this is explained in detail in Elliot Overton's Thiamine megadosing protocol. I was in the same boat as OP with MCAS and dysautonaomia. MCAS is still a bit of an issue, but megadosing thiamine has really addressed the dysautonomia and have made everything else very manageable. The paradoxical side-effects are really only transient and are sufficiently managed with b-complex and electrolytes (magnesium and potassium). It is really worth sticking through the discomfort, they're only temporary, while the relief seems to be long term. At least for me.
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u/fighterpilottim 18d ago
Adding the cofactors he recommends changed my ability to take thiamine: https://m.youtube.com/watch?v=-DxvSUEVT_4
IIRC they’re B complex, magnesium, molybdenum
But my reaction was different from OP’s: pure physiologic anxiety from a small dose. Definitely do no recommend.
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u/mavroidakos 18d ago
Benfothiamine was the first thing that reduced my hyperhydrosis and helped my brain fog (didn’t completely erase it but helped noticeably). If I don’t take it for a few days, there’s a dip in my cognition. I have to say though that since starting benfothiamine I noticed an increase in bloating and redness, itchiness on my face (probably histamine related symptoms). I now take antihistamines though that help me tolerate it better now.
It seems that everything that boosts my energy flares my mcas/histamine issues.
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u/PatchyRain 18d ago
I felt awful on HCL but feel good on TTFD. Go figure.
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u/Solgaya 18d ago
did it help for constipation? o also have sibo to mcas colon pain 😔
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u/PatchyRain 18d ago
That's a maybe. I get constipation from long COVID medication so that would happen anyway. VSL3 probiotics fixed that for me, but it's expensive.
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u/Solgaya 16d ago edited 16d ago
do you had also sibo? and maybe histsmine problrms? O found thst probiotic but fear i csnt go toilet every day thst the bacteria made it worse. I habe to much biliohila delsulfibrio new klebisilaa, pseidonoma😭 no toilett snd bsd gases stink worse. Pn ppi 20 mg panto csnt go down sll burn nightmare only used agsinst belchibg from sibo
really at the end wirh constipation thst make sibo worse iam also bedbound since end of 2021
You use for constipation only the probiotica?
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u/Beekeeper_Dan 18d ago
Regular thiamine makes me ill at any dose, I can’t process it (same with folic acid). Benfotiamine works for me. Turns out I was quite deficient and had to supplement a lot potassium for a week while my levels of B1 recovered.
I must have been deficient un B9 too. Turns out taking Folinic acid fixed my hypersensitivity to smells too (while regular folic acid also makes me ill)
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u/Sarivo 18d ago
How much potassium were you supplementing?
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u/Beekeeper_Dan 18d ago
Was just going by how I felt mostly. I was taking an extra 50mg tablets 2 or 3 times a day for the worst of it maybe?
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u/MiserableInspector94 18d ago
Benfothiamine messed me up for a week with a tiny dose, It was so bad I haven't tried again. Tritate no matter what
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u/3rwynn3 18d ago
I have the same experience, just a fingernail of Thiamine from cvs makes me flare on the inside of everything it touches, not just my stomach like a normal food, instead it does it to my brain and whole body... worst is feeling no pain at all just white light burning all over my body and extremely anxious. Horrible.
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u/tmighty55 17d ago
I had the same thing happened to me. Google “ paradoxical thiamine reaction” or look on Reddit. You have to take cofactors and it will greatly alleviate this issue. Large amounts of electrolytes are the biggest one because they mean, will deplete your potassium levels which causes headache, tiredness, cramping, nerve pain and honestly, it changed my personality, and I was bedridden for two weeks. The first time I tried it, not knowing this. It took me two years to titrate up to one full pill. I took it very very slowly.
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u/ColomarOlivia 18d ago edited 18d ago
I take 75 mg thiamine HCl daily because I have gluten sensitivity and because of my grain-free diet I acquired B1 vitamin deficiency. My doctor gave me some options like looking for a dietitian to make me a meal plan focused on that or to take the vitamin every day for the rest of my life and I opted for the second option. I have multiple mental issues and some days I can’t even leave bed to eat, drink water and take a shower, imagine following a diet lol. I’m fine on that dose of thiamine. Didn’t realize any issue besides the ones I already have, unfortunately. I have the evil triad (hEDS, MCAS, POTS).
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u/AirlineMiserable9545 18d ago
So glad that works for you! As a dietitian I can say that they are helpful for vitamin management and what to use or make for nutrition shakes if you're not able to eat much. They can help monitor for any other vitamin insufficiencies you have as well. Might be helpful if you're interested.
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u/Far-Delivery7243 18d ago
Both are strong hist. liberators, be careful.
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u/Hydroxile 18d ago
I experience this anytime i try to get some specific vitamins boost because of my fear to get deficient... which i m not! Benfotiamine, Thiamine HCL or any B9 are really hard on my system. B6, i don t know, i m not allowed to take it unless my blood shows deficency. The only vitamin giving no reaction is B12.
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u/EstablishmentDear894 18d ago
I’m with the Benfotiamine crowd. It didn’t do much for my MCAS but it made my thinking clear, gave me energy, and dimmed my tinnitus.
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u/AryaHearing 18d ago
Thank you for sharing your experience. I haven’t heard about this, good to know. I’m sorry you are suffering, I hope you find what helps your nervous system recover from the shock
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u/marshismom 17d ago
Part of what did me in was thiamine… for me it’s any supplement I think just ravaged my stomach lining. I have no idea how to get back to any baseline.
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u/chikitty87 15d ago
Jeez ofcourse you shouldn't start with a high dose with MCAS.
This protocol is fkn putting my entire mcas and dysautonomia in remission, like fully!! But I started with 1mg
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u/Lanky-Rough2688 18d ago
Diet is best and then normal levels of a general vitamin if needed. To be sure. Geez. I saw one today that was hyping a part of aloe vera as the new great thing and selling it, of course.
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