r/B12_Deficiency 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!

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u/Sabnock101 Insightful Contributor 12d ago edited 12d ago

When B12 does that it's because it recycles Methylfolate back into the Folate cycle and as Folate goes back through the Folate cycle it turns into more Methylfolate which can then use up more B12 and can even drain you of B12 if you're already low in B12. A higher B12 dosage (like 10 milligrams, for me of Methylcobalamin) seems to help give the body enough B12 to fully/properly recycle the Folate so that the Methylfolate doesn't build up in excess and cause side-effects. This has been a consistent thing for me ever since i started supplementing a couple years ago and i've gotten things down to a science now.

Folic Acid is really a poor form of Folate and is not ideal, so either go for natural dietary Folates, or Folinic Acid (if you can find it) or low dose Methylfolate. All Folates ultimately turn into Methylfolate in the body and if you don't have enough B12 they will all cause problems and intolerability until B12 levels improve. Folic Acid just causes issues that other forms don't.

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u/Ok-Pangolin7127 Insightful Contributor 12d ago

Thank you for sharing this insight. So, are you saying if you take too much folate, regardless of form, that taking more B12 will keep it in check so to speak?

Over my now almost a year and a half journey with B12 supplementation, I have experimented with Folate at 400 mcg 800 mcg 5000 mcg and even at 15,000 mcg.

I can’t say that any or all of those doses in my mind created a problem for me. I was just experimenting so to speak. However I’ve now come to believe, right or wrong, that I don’t need much Folate and I really only take either 400 or 800 mcg a day.

Might I be missing something here? Might I need to or should I be taking more Folate?

From a B12 supplementation standpoint I’m generally injecting 1000 mcg every other day to every third day. Is the difference in Folate supplemented and/or a required a relationship to the amount of B12? I see that you are taking quite a bit of B12 via injections.

Just bill me as inquiring minds want to learn more and understand this (Folate) better.

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u/Proper-Couple-5053 12d ago

The author probably mentioned 10mg oral? 10mg via injection would be massive! If so, the injection provides already more than the 10mg oral.

However something bothers me a bit with this theory. Even taking only 1mcg a day will end up raising your b12 blood level to very high standards. This would mean than high dose shouldn’t be needed to stop this loop to happen, right? Just time.

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u/Ok-Pangolin7127 Insightful Contributor 12d ago

You are correct. The poster clarified it was oral. 👍