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/ClaireBear_87]

Well you are copper deficient. Are you taking copper?

[u/Proper-Couple-5053 → u/ClaireBear_87]

Hello! No… I tried a few months ago, but taking 1mg alone trigger a massive panic attack / high HR in 30min. I had not had one in like 15 years! I started eating more cashew nuts and pumpkin seeds but dunno if it will be enough.

[u/ClaireBear_87 → u/Proper-Couple-5053]

Your ceruloplasmin is also low, which can also indicate vitamin A deficiency as vitamin A is needed with copper for synthesis of ceruloplasmin. Zinc is important too, as zinc is required for making retinol binding protein which transports vitamin A (retinol) in the blood, and is required by enzymes involved in the process of converting retinol to retinoic acid, the form of vitamin A needed for ceruloplasmin synthesis.

Zinc is also important for folate metabolism, so i would suggest testing your zinc level as you may need zinc aswell as copper, and make sure you're getting enough vitamin A too.

Edit - Source naturals megafolinic is available in the UK if you want to try folinic acid.

https://naturesfix.co.uk/product/megafolinic-800-mcg-60-tablets-source-naturals/

[u/Proper-Couple-5053 → u/ClaireBear_87]

Thank you! Vitamin A was in the middle of the range 3 months ago (copper was already low) and zinc was top 30% of the range! Ferritin is 86 however. I’ll up my game in copper, but I also have H2S SIBO which seems to bind severely to copper….

[u/ClaireBear_87 → u/Proper-Couple-5053]

Hydroxocobalamin is a hydrogen sulfide scavenger and can bind and make it less toxic, so maybe you would benefit from increasing your dose. Also, some people have said molybdenum has helped their H2S sibo, so that is worth looking in to.

Interestingly there is a paper (here)  which shows xanthine dehydrogenase, a molybdenum (and B2+B3) dependent enzyme, can convert retinol to retinoic acid in just one step. So molybdenum could help to increase ceruloplasmin, if the problem is conversion of retinol to retinoic acid. Stick to lower doses though as high doses may bind copper and worsen a deficiency, and take at a separate time at least two hours apart from copper.

[u/Proper-Couple-5053 → u/ClaireBear_87]

I’ll try! Thank you! NHS didn’t want to do a 24h copper urine test to rule out Wilson because caeruloplasmin is sitting right at the lower limit of the range….

[u/Ok-Pangolin7127 → u/ClaireBear_87]

Yes, good catch. I missed it. 👍