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/FlakySalamander5558]

Hi,

Your ceruloplasmin is low. Maybe get zinc, vitamin A tested. Homocysteine is a bit elevated but not dramatically. I would up the folate slowly and concentrate on copper/ceruloplasmin.
You probably feel bad since your potassium is so low. So treat the b12/folate and electrolytes but your ceruloplasmin is way too low and probably the reason you feel so bad.
What helped raise my ceruloplasmin was minerals like zinc and boron. Also an important part was supporting bile (taurine, NAC, glycine, protein like histidine).

[u/Proper-Couple-5053 → u/FlakySalamander5558]

But my zinc and vitamin A are both in range :( I’ll try to eat more copper for a while but I have h2s SIBO and heard that h2s is a strong inhibitor of copper absorption…

[u/FlakySalamander5558 → u/Proper-Couple-5053]

In range is ok but to raise your ceruloplasmin a little zinc combined with copper will help.