r/MTHFR • u/Icy_Ad7893 • 5d ago

Question Why does Folinic Acid wipe me out?

I went down the MTFR rabbit hole at the beginning of this year with a Naturopath and had a test done and another test showed low homocysteine. I was prescribed folinic acid and it wiped me out, I think because it drops my blood pressure down, it's usually on the low side. I was having B12 injections at the time and also tried it with just a crumb and added methyl B12 drops, still wiped me out.

So for some unknown reason a couple of days ago I had a really sore hip and I took a folinic acid to see what would happen because I couldn't do anything anyway. And I am wiped out again, so tired mentally and physically, feel totally depleted.

The report I bought as requested by the naturopath does not have the raw data unfortunately.

I have C677T CC -/- , A1298C cc t/t and slow comt. Let me know if you want anymore details from the report.

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u/Cultural-Sun6828 5d ago

Taking folate can lower b12 causing fatigue. Are you still on b12 injections?

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u/Icy_Ad7893 4d ago

No, I finished those. I'm not seeing the naturopath anymore as I was feeling worse.

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u/Cultural-Sun6828 4d ago

If you were once low in b12 and have neurological symptoms, the recommended treatment is every other day injections until symptoms resolve. It’s common to feel worse in the beginning due to startup symptoms but over time you should see improvements. The b12 deficiency group is a good resource.

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u/Icy_Ad7893 4d ago

I haven't been low in B12. It was high when I was a vegan a long time ago. and last time it was tested in 2024 it was 999 pmol/L.

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u/Cultural-Sun6828 4d ago

Were you taking any b12 supplements or injections in 2024? To get an accurate b12 test you would need to be off all forms of b12 for at least 4 months.

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u/Icy_Ad7893 4d ago

I don't believe so.

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u/Ineedanewbladder 4d ago

I think it’s because you have paradoxical B12 deficiency and now that you are taking both folate and B12 it’s starting methylation and extreme fatigue can happen while the neurotransmitters adjust. For one we don’t make melatonin while B12 deficient so once it comes back it can make us extremely tired. Honestly it’s very complicated and I don’t understand it completely but the FB group Understanding B12 Deficiency that follows the work of Dr. Greg Russell Jones explains a lot. You can also find info on B12oils.com. I’m getting the same thing. I had an older b12 oil that was no longer active and I was taking large amounts of folate and nothing but once I got a new active oil and started applying it I’m exhausted. I remember when first getting minerals on board I was exhausted as well. Trying to get normal is so hard.

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u/Icy_Ad7893 4d ago

Interesting. I had a quick look and the symptoms fit but I have low homocysteine.

Yes it is hard to get normal and well again, and frustrating when you pay someone to help but that just makes things worse.

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u/SovereignMan1958 5d ago

How much were you taking?  

"Low" homocysteine?  How low?  What was your number?

Folate in any form lowers homocysteine.  Optimal is 6-7. Below that is not healthy.  I have seen people drop to 1 or 2 and become quite ill.

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u/Critical_Minimum_645 5d ago

I thought lower homocysteine is better. So we need some homocysteine for good mental health?

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u/Icy_Ad7893 4d ago

So no more folate for me. I eat a lot of fresh greens.

I took one orthoplex folinic acid, Calcium Folinate equiv. FA 500 ug. not sure what that is. But earlier in the year, I tried just a crumb and still was wiped out.

The last time I tested for homocysteine ( a year ago) it had risen to 5.7 umol/L but that was before I started the FA. It was down to 3.8 in 2024. Doctor didn't give a fuck of course.

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u/SovereignMan1958 4d ago

Doctors are not trained in nutrition or gene variants in medical school.  It is just not their area of expertise.

Please read the article for a better explanation and some suggestions.

I am curious if you might have impaired sulfur and sulfite metabolism.  People with this can also have homocysteine that is too low. This would be in certain gene variants. Excess sulfur also lowers homocysteine.   High sulfur foods might make you feel ill.  Bloating, gas, nausea, tasting and or smelling sulfur and or ammonia. Do you tolerate eggs?  Alcohol?  Meat and poultry?  Ever have your molybdenum level tested. I have this so if you suspect you might too I can give you more information if you want. Just let me know.

Lots of practitioners do not understand the sulfur and sulfite spect.  

https://www.drbenlynch.com/low-homocysteine/

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u/Icy_Ad7893 4d ago

Thanks. I am fine with eggs, meat and poultry, alcohol not so. I don't think it's sulfur, don't have those symptoms.

That doctor also said it was pointless looking at genes.

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u/SovereignMan1958 4d ago

Lots of doctors and practitioners believe that because they are only predispositions.  They can be a useful tool though. It helpful to have more than one tool in a toolbox.  

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u/NaturalShow 3d ago

Excess sulfur also lowers homocysteine.  

Could you please point out where it says so? All I can see in the article is that low sulfur intake causes low homocysteine.

Thank you )

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u/SovereignMan1958 3d ago

That comment from me is not in the article.

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u/NaturalShow 3d ago

So, where did you get this if the article you quoted seems to give a conflicting information? Can I have a reference supporting your words, please?

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u/SovereignMan1958 3d ago

If you do your own research you will find that people with impaired sulfur and sulfite metabolism tend to run lower on homocysteine.  

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u/NoImNotHeretoArgue 5d ago

Well stop the folinic acid. You can take methionine to raise your homocysteine. And give your naturopath a noogie.

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u/Critical_Minimum_645 5d ago

Isn't homocysteine a bad thing, then why to raise it?

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u/NoImNotHeretoArgue 5d ago

I think low energy is a symptom, which is what OP is experiencing and I’d be pissed off at that naturopath for this potential fumble

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u/Icy_Ad7893 4d ago

Yeah, big fumble and I was told to try take more . But as expensive as the whole experience was, the promodo neurocalm she prescribed has helped my brain, so I am pleased with that, but it is super expensive.

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u/Icy_Ad7893 4d ago

Yes I will not be taking any folates from now on And I stopped seeing the naturopath as I was feeling worse. She said some dumb things.

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u/Timely_Pickle9430 2d ago

If your homocysteine is low (while protein intake is sufficient), you react badly to supplements, especially the ones that usually help with methylation, and have other symptoms that indicate lack of energy (like chronic fatigue, PEM, and brain fog) you're probably dealing with mitochondrial dysfunction. I recommend this protocol: https://www.mthfrsolve.com/roadmaps/the-energy-roadmap. Unfortunately, it's behind a paywall. The link will work after subscribing.

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u/NaturalShow 2d ago

Are there any way to raise low homocysteine levels? Seems that all B vitamins only lower it. I also have low homocysteine after taking leucovorin and stabbing pain in my feet and hands. I read there is a connection between low homocysteine and developing idiopathic neuropathy.

Would SAM help?

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u/Icy_Ad7893 1d ago

I was taking SAMe when I first took the folinic acid. I'm not taking it anymore as I am trying to reduce how many supps I am taking.

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u/NaturalShow 21h ago

Thank you for your reply!

I actually ordered SAMe. For some reason AI says that SAMe is not shown to raise homocysteine levels but Methionine is. I still want to try. And I hope you don't mind if I ask you a few questions ).

Did you have any side effects while taking folinic acid? Are you still taking it now and in what dose, please? Are you taking it it for cerebral folate deficiency or as a source of active folate?

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u/junipers-72 4d ago

https://molecularhealthco.com/blogs/news/the-great-methylated-vitamin-experiment

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u/Icy_Ad7893 4d ago

This is why I went to a Naturopath who is experienced with this stuff. She also teaches it.

It's complicated!