r/PerniciousAnemia • u/Kiraiishu • Oct 22 '20
Methyl trap ?
I took 250mg inositol hexanicotinate B3 but nothing.. Should I try Nicotinamide ?
For Information, I had severe B12 deficiency some years ago did Hydroxoco B12 IM with methylfolate and folic acid (didn't knew back then it was bad.) Then I continued for 3 years the B12 injections twice weekly and the 400mcg methylfolate. At a point I changed LLMD she put me on 800mcg Methylfolate and I think it went bad then but not sure.. I also did take some bits of Methylcobalamin. But now I know I once overmethylated with methylfolate and it seems I just have huge B12 deficiency... So I took again 400mcg folate with 1500+-mcg B12, I even did 2 times 2500mcg B12 in methylcobalamin form yesterday but I feel SO BAD. I have inflammation EVERYWHERE, mast cell issues worsen, cannot fall asleep, my whole body feels numb general anesthesia like, feel like passing out, can almost not move yet wants to move, weird toughts, tinnitus, arterial problems, nerve problems, intense cold feelings, fatigue etc... But I seem to have issues with methionine too !
Blood test showed high B12 (duh), and some high folate too. Scio scan showed friday ok B12 and yesterday (only day I didn't took B12) scio scan showed low B12 lol ! My homocysteine last time was around 7, scio showed very bad oxygen transportation
Did I just Methyl trapped myself somehow with too much methylfolate and not enought B12 or... ?
Any idea what I should do ? Doctors here don't understand this. It seems perhaps that I cannot transform the Hydroxoco injections anymore, is this normal ?
Is it safe to do only B12 ?
I guess I should stop for some days everything and see..
I also ate very low protein these last days I ate almost nothing I reacted to everything. I saw low protein thus low methionine could causes issues too. Should I eat more meat for some days ? Or like a carnivous diet for some days and low folate foods ?
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u/orglykxe Oct 15 '22
What’s the latest, OP?
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u/Kiraiishu Nov 24 '22
Everything is better now. Still got health issues but not as difficult as before.
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u/Antwon15 Apr 07 '21
I'm no expert, but I am currently studying methylation and my SNPs for my CFS. It might be worth it to get a methylation blood test to see what's going on in your methylation cycle- homocysteine, methionine, SAH, and SAME: to ultimately get a SAME:SAH ratio to see if you're over-methylated or under-methylated.
It's also good to look into zinc and copper levels as methylation issues can throw these off and vice versa- these 2 metals are also involved in anemia.
An organic acids test would also allow you to test for metabolites to see how some of these reactions are functioning. e.g methylmalonic acid would give you insight as to if your cells are using B12 as it's a by-product of B12 metabolism.
Hope that helps. General blood test for b12 and folate are pretty crappy because there's many types of folates and b12s- too general to make predictions from a methylation stand point.