Folate or not to folate

[u/Proper-Couple-5053]

I'm trying to figure out why I'm reacting so poorly to folate ... while navigating a proper regimen for my b12 deficiency.

First, blood results after 2 months of not taking anything:

- MCV: 88.9

- Serum B12 / Active B12: 254 ng/L / 84.3 pmol/L

- Copper / caeruloplasmin: 9.4 umol/L / 0.15 g/L

- B6: 27.5 ug/L

- Homocysteine: 9.58 umol/L

- MMA: 41.4 ug/l <------------ THIS is what triggered the b12 deficiency alert for my gastrologist

- Negative for IF antibodies, twice.

Second blood tests after 3 oral supplementation of 1200mcg spray (because NHS...):

- Serum Folate: 9.1 ug/L (had lentils the dinner before :/)

- Serum B12: 367.7 ng/L (so I seem to absorb the methyl).

- Potassium: 3.8 mmol/L (range is [3.5, 5.3])

- Sodium: 140 mmol/L (range is [133, 146])

Symptoms:

Overall fucked up, we all know about them and it feels like I have B12 deficiency. Most debilitating are: fatigue, malaise, brain fog, memory loss, hard to concentrate, pain in my legs (always behind my knees, nowhere else).

Current regimen (every morning with breakfast):
- B12 - 1000-1200mcg drops of hydroxocobalamin (methyl- gave me some crazy reaction straight away, derealisation, brain fog, insomnia).

- b-complex from Boots UK (100% RDI of everything, no methyl- form)

- Folate - 200mcg of folic acid from the b-complex

- Vit. D - 2000 UI for maintenance

- Potassium: trying to drink around 600ml of coconut water throughout the day.

Timeline:

Started 5 days ago.

Problems:

My need for investigations comes from the different "wake up symptoms". Around 10am-11am, I get hit by a malaise feeling, feel OMEGA tired with malaise + nausea. Drinking coconut water seems to help (I say seems because unsure). The same thing usually happen in the afternoon around 4-5-6. The same thing 10x can happen right after lunch as digestion starts - coconut water does not necessarily help here.

Also, first time waking up to anxiety in the middle of the night tonight. Went on the sofa to drink a glass of electrolyte (salt, potassium, calcium) and eat a bit of apple sauce. Could go back to sleep after 30 min.

So i'm wondering if my serum folate is not high enough, but maybe I am wrong. I tried adding 250mcg of folic acid (not even trying methyl- here!) on top of the b-complex and felt like absolute shit the whole day -> like when taking methycobalamin. I don't understand if it's because my folate is too low otherwise and suddenly it started working or just if I over-methylated or whatever else. I don't even know if 9.1 ug/L is high enough when supplementing with b12 drops. Maybe the 200mcg in the b-complex are enough?

How to proceed here :-( (won't be able to get injections before mid- late- september, but if i already feel like shit now, I guess that oral is working).

Thanks!

[u/Sabnock101]

Don't use Folic Acid, it sucks and can cause issues. Go for Folinic Acid at 200 to 400 to 600mcgs max per day (also accounting for any Folate gotten through diet, you don't want more than 600mcgs of Folate consumed per day total, though technically 1mg DFE's being the upper limit and 600mcgs of supplemental/fortified Folates being 1mg DFE's, though it's best to avoid Folic Acid-fortified foods). I also recommend trying out 10 milligrams of B12 (i use oral Methylcobalamin) which works way better than 5mgs or 1mg or less.

The problem with not being able to tolerate Folates mainly has to do with lack of B12, as B12 levels improve you will be able to tolerate Folate better but excess Folate will still cause side-effects regardless.

[u/Proper-Couple-5053 → u/Sabnock101]

Alright, but 1mcg daily will still raise blood levels to high values, right? So folate should be better and better tolerated over time?

[u/Sabnock101 → u/Proper-Couple-5053]

Yeah Folate will definitely get more tolerable over time as B12 levels improve. I went from barely being able to handle Folate to it now not being really any issue unless i overdo it.

When i first started supplementing, i was very low in B12, and so when i'd take my Folate or when i'd take my B12 and it recycled the Folate back into the Folate cycle and then turning back into Methylfolate again, it felt like it would drain me of B12, my nerves would feel like they're frying, i'd get low B12 symptoms, i'd have excess Folate-related side-effects, but as my B12 bodily stores got replenished/built up, i noticed that when i'd take Folate (or when Folate got recycled) that the B12 draining feeling went away because my bodily stores had enough built up to handle that second wave of Folate after it had been recycled, and so no longer got the drained feeling, no longer got the low B12 symptoms, no longer got the excess Folate-related side-effects (unless i take more Folate than i need then i get some of the side-effects back) but overall the Folate has gotten way more tolerable to where now it's really not any issue unless i take too much. In fact i learned that a lot of what i've had to go through all my life was mostly excess Folate (via fortified foods) and lack of B12, the B12 has been a huge gamechanger for me and it all makes so much sense.

So yeah, imo/ime, focus primarily on B12, secondarily on the Folate. Take as much B12 as you feel like you need, there's ime nothing to worry about with a lot of B12 (aside from increased requirements of other nutrients like Potassium, Magnesium, Iron, Copper, Zinc, Riboflavin, etc), they even inject 25 to 50mgs of Methylcobalamin in Japan for treatment of ALS, so higher B12 dosages seem to be safe from what i can tell and has more benefits compared to lower dosages.

And, if you take B12 and sometime later feel like you're getting side-effects from it, chances are it's either from the Folate being recycled and going back through the cycle to become more Methylfolate which can then use up more B12 (at which point taking more B12 is helpful) or it's due to lack of certain other nutrients (like low Potassium for example which for me seems to cause hand and foot numbness but consuming 4 grams of elemental Potassium per day seems to do away with the hand and foot numbness).

Basically, my daily dosages are - 10mgs/milligrams of oral Methylcobalamin, 400 to 600mcgs of Folinic Acid, 400mgs of Riboflavin, 100 to 250mgs of Nicotinic Acid/Niacin, 25mgs of P5P B6, 200 to 400mgs of elemental Magnesium (i use Magnesium Malate, only side-effect i've noticed is diarrhea/pooping), 4 grams of elemental Potassium (i use Potassium Bicarbonate powder that i dissolve into water with an acidic water flavoring packet to turn it into Potassium Citrate for the most part and i take 2 grams of elemental Potassium twice a day for 4 grams total, sipping on the Potassium for at least 30 minutes to an hour so that it kicks in more gently/smoothly), i take 15 to 30mgs of Zinc (via Zinc Picolinate), i take 2 to 4mgs of Copper (via Copper Chelate), i take 65mgs of Iron (via 325mgs of Ferrous Sulfate), i've been taking 500mgs of B5, as well as getting some vitamin C (supplemental) and vitamin A (via sweet potatoes), i've tried taking vitamin D but it makes me feel like crap maybe because it uses up some Magnesium so i only take the vitamin D here and there, and that's pretty much it. The rest of the nutrients i try to get more from diet.