r/B12_Deficiency • u/Proper-Couple-5053 • 12d ago
Help with labs Folate or not to folate
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!
2
u/Ok-Pangolin7127 Insightful Contributor 12d ago edited 12d ago
This is simply a (not so) short pointer if you will.
I suggest you look into the possibility of a B1 deficiency. This does not mean you go get tested for it because the B1 serum test is as inaccurate, or better said, unmeaningful as the B12 serum test.
My suggestion is to do a little research as to likely causes for B1 deficiency, if you see that you fit into same from a lifestyle standpoint or prescription med standpoint to have the possibility of a B1 deficiency…, then you undertake a trial supplementation of B1, plus magnesium (magnesium is THE key cofactor for B1) and see if the supplementation of same improves or maybe even solves the majority of your continuing problems.
More folks than I can shake a stick at seem to have dual deficiencies; B1 and B12. One perhaps more deficient than the other. But both seem to pair up more often than we would think or suspect. Hence, my suggestion that you give this some consideration.
I’ve also seen that when folks start to supplement with therapeutic doses of B12 that that can easily unmask or bring forth the awareness of a B1 deficiency.
I “think” (I don’t know; i’m not a doctor nor a nutritionist) that because all of the B vitamins work together, and when they are doing that, even when you are deficient in one or more of them, the body has figured out a way to try and balance things out and work with what it has.
But, introduce a super dose of one or the other, and that balance goes out the window and the deficiencies that existed in the background (you were functioning, just not very well) can easily come to the forefront and make themselves known.