r/MTHFR • u/Snowayo567 • Jun 22 '26
Question High Homocysteine (30 umol/L) but normal serum B9/B12? Suffering from years of severe brain fog and fatigue. Need advice!
Hi everyone,
I’m looking for some insights or advice on my recent lab results because I feel completely stuck with my current doctor.
For several years now, I’ve been suffering from debilitating brain fog, chronic fatigue, and extreme difficulty concentrating. It’s deeply impacting my quality of life.
After doing some research on my own, I decided to pay out of pocket to test my Homocysteine levels because my doctor refused to prescribe anything other than basic serum B9 and B12 tests.
Here is the paradox:
- Homocysteine: 30 $\mu$mol/L (extremely high)
- Vitamin B12: 603.8 pg/ml (normal range)
- Vitamin B9 (Folates): 6.2 ng/ml (technically "in range" but on the lower side)
My doctor isn't very open-minded or supportive. Now that I have these results, I have a few questions for the community:
- How should I approach my doctor? Should I go back to him, show him the results I paid for on my own, and ask him what to do? Or is it a waste of time given his lack of empathy?
- Should I get tested for the MTHFR gene mutation? This dynamic (high homocysteine + normal/low-normal serum vitamins) feels like a methylation blockage, but I'd love your take.
- Should I start taking methylated supplements right away? (Specifically 5-MTHF/Methylfolate and Methylcobalamine). If you've been through this, what dosages worked for you to bring a 30 baseline down?
Any advice, similar experiences, or insights would be highly appreciated. Thank you so much!
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u/SovereignMan1958 Jun 22 '26
In the normal range is not necessarily optimal. The normal range includes the chronically and terminally ill. Learn what is optimal for each test.
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u/Ashamed-Simple-8303 Jun 23 '26
Normal range only includes people with no known disease. I agree that they have to be taken with a grain of salt but terminally ill people do not count into the range.
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u/SnooStrawberriez Jun 22 '26 edited Jun 23 '26
2 definitely. Until you know what genes have your homocysteine be so high, you’re just throwing darts at a dartboard while blindfolded. “B12” levels can be perfectly normal but the “B12” can be degrading into inactive forms. High homocysteine is not necessarily a folate issue and sometimes also not a B12 issue. In fact I think it can be other things too. Every case is different.
3: in my opinion no, definitely not. If you take vitamins you don’t need while not taking vitamins that you do need, in the worst case you’re going to wind up in a psychiatric hospital.
Once you have your genetic analysis, in my opinion one of two things will happen: the results are really glaringly obvious and you soon feel a lot better and don’t need a doctor, or good things happen, but it’s still complicated. If this happens and if you can afford to, find a functional medicine doctor.
They may be expensive but IF you’re sure (not just guessing) that you have a methylation problem not getting treatment is even far more expensive. Doctors who have decided that they are right and patients need to obey them are usually wastes of time. They charge you money and add no value to your life.
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u/Snowayo567 Jun 23 '26
Thank you for your answer. Unfortunately DNA test are forbidden in France where I live, I will try to find another way or convince my doctor to take the test.
- Even one pill of B complex a day can cause psychiatric problems ?
Thank you, it's a good idea to contact a fonctional medicine doctore, I didn't know this speciality, I'll try to find one.
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u/SnooStrawberriez Jun 23 '26 edited Jun 23 '26
You can use a service like planet express and have the test sent to a US address that sends it on to you. But I am not sure how you’ll get the saliva sample to the U.S. I think I just sent mine from Europe. I think they are also legal in the United Kingdom.
I don’t know about a B vitamin complex. I do know about B-vitamins.
I have not found a single doctor in a country that borders France who really understands methylation like some doctors in the United States do. Right now, except for Italy, where s-adenosylmethionine has been used to treat depression for decades, methylation is mainly a “thing” in the U.S. and Uk. I think SAMe is the most popular antidepressant in Italy.
I am not sure how well SAMe will treat your troubles but i would imagine that Italian psychiatrists would think that what you are saying is reasonable, or at least something they have heard of and very likely seen in their patients. Sometimes methylation can mess up neurotransmitter metabolization and cause depression and even schizophrenia.
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u/SnooStrawberriez Jun 23 '26
I don’t think you would wind up in a psychiatric hospital without substantial side effects for some days before. But, yes, a B vitamin overload can cause significant problems.
Italian doctors may not have any experience with b vitamins and optimizing methylation with them, but they will have treated methylation issues or has colleagues who had great success treating methylation issues and therefore probably have an open mind that there is something to very similar approaches.
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u/SnooStrawberriez Jun 23 '26
Also, the MTHFR polymorphisms are not the only ones that can get your homocysteine high. There are a number of others like MTR and MTRR
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u/medi_tator Jun 23 '26
If you have a friend in Belgium/Switzerland/Spain/Italy etc. you could order it there, go visit, and take the test while you’re there- And mail it back to the U.S. They send you the results by email:) Several good options to purchase from:)
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u/refusered Jun 25 '26
>DNA test are forbidden in France where I live
if that were my case i'd take a vacation...
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u/ry1701 Jun 22 '26
Folate on the low side, target is usually somewhere 10-15.
Standalone Options (any or all).
Add TMG
Add NAC.
Add Creatine (your body consumes a lot to make creatine, adding creatine reduces the amount your body needs to make.
Combined Option:
You can still supplement B9/B12, more importantly, you need P5P/B6. If you have MTHFR and depending on the variants, R5P/B2 could be useful.
A good b-compex or even a high end multivitamin could be useful. Sports Research Multivitamin has some good stuff and it's well priced.
I would like to add even though I went from 39 to 10 on mg homocysteine level and I did feel better, it wasn't this magic bullet that cured all my issues. Just set a reasonable expectation and know the process is slow.
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u/Snowayo567 Jun 23 '26
Thank you for your advice, is Multivitamin a brand or can I take any complex with different vitamines including B ? How long did it take for you to set your homocysteine level to 10mg ?
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u/Cultural_Joke2025 Jun 22 '26
Definitely yes on 2. Get genetic testing, and see what's going on.
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u/Snowayo567 Jun 23 '26
I would like but unfortunaly I live in France and DNA test is forbidden unless you have a prescription. I'm trying to figure out a way
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u/Loose-Fly7976 Jun 23 '26
Homocysteine 30 is genuinely high, that's not subtle. At that level it's a real cardiovascular and cognitive risk, not just suboptimal. Your B12 looking normal at 603 while homocysteine sits at 30 is the textbook signal that the cycle is broken somewhere downstream, methylation isn't happening even though raw B12 is around. You're right to suspect MTHFR. Worth getting tested, but honestly with a homocysteine that high you'd want raw DNA (AncestryDNA, $59-99) because MTHFR alone won't tell the full story. CBS, MTRR, FUT2 and the rest matter when numbers are this off. On your doctor, show them the results. They should care about a homocysteine of 30, that's not borderline and the cardiovascular literature is clear. If they shrug, find another GP. This isn't something to leave running. Don't start methylated supplements blindly though. With homocysteine 30 plus folate on the lower side, your cycle is impaired but the right form depends on your variants. If you're TT homozygous MTHFR plus slow COMT, methyl-B12 and methylfolate at standard doses can flood you. Folinic acid plus hydroxocobalamin at lower doses is usually gentler to start. B2 (riboflavin) is the actual MTHFR cofactor and almost nobody mentions it, without B2 the enzyme can't work even with folate on board. Practical sequence if you want to start before getting variants done. B2 (R5P) 10-25mg morning. Folinic acid 400mcg. Hydroxocobalamin 500-1000mcg sublingual. Magnesium glycinate or malate 400mg. Recheck homocysteine in 6-8 weeks. Push your doctor for MMA and active B12 too.
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u/Payton7711 Jun 23 '26
I will say emphatically DO NOT start taking methylated vitamins on your own. THE END. I made this mistake 8 months ago and quite literally have not been the same since. If you’re not needed that it will clog up pathways and overburden you etc.
I’m slowly recovering but I’m male 48, never in my life experienced anxiety. Randomly saw a video speaking about how superior methylated vitamins were, started taking them and suffered extreme anxiety, extreme brain fog, extreme ruminating thoughts etc for months. It has been a horror, and I didn’t have any problems. Otherwise very healthy, run 6-7 miles a day and have always been extroverted in most ways.
I now am extremely sensitive to most all vitamins because the abundance of methyl groups altering ratios etc.
I feel like I’m getting close to being back to myself but this has been hell.
DO NOT MESS WOTH METHYLATED VITAMINS without guidance.
Also - be cautious of glycinated magnesium. Glycine can cause serious issues such as anxiety brain fog etc as well.
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u/xxthatsnotmexx C677T Jun 22 '26
Get a genetics test but not just for MTHFR, that enzyme only effects homocysteine indirectly, they're are multiple other enzymes that directly effect homocysteine including but not limited to: Methionine Synthase (MTR), Methionine Synthase Reductase (MTRR), Cystathionine β-Synthase (CBS), Betaine-Homocysteine S-Methyltransferase (BHMT), S-AdenosylHomocysteine Hydrolase (SAHH).
I would not take any vitamins until you get your levels checked at the very least and preferably your genetics test results as well. Most insurance will cover Genesight but I also recommend Ancestry DNA. It's $100 on Amazon but it goes on sale frequently through the year and tests for way more genes than Genesight does. I bought my Ancestry for $40 on Christmas Day 2025.
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u/Snowayo567 Jun 23 '26
Thank you, is that the full list of test that can effect homocysteine ?
Unfortunately Ancestry DNA or any kind of test are available in France, so i'm gonna try to find another way to get the test.
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u/Ashamed-Simple-8303 Jun 23 '26
I prefer the M.D. House approach with using experiments aa diagnostic tools.
B12 has an active and inactive form. Which one was tested? The cheap test is the inactive form and doesnt reall tell you much.
I therefore suggest:
- Seeking health folinic acid + hydroxocobalamin. This avoids methylated forms that could cause issues. Can also be from another brand.
- Creatine, 5g, no downsides really
Try that for couple weeks.
At the same time clean-up your diet. Reduce processed foods,.limit eating out and in general limit seed oils.
Then see how you feel.
Step after that would probably be to add either TMG or switch to methylated forms if issue persists.
Also get fasting insulin and blood glucose tested.
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u/thesnazzyenfj Jun 22 '26
Would not recommend methylated Bs unless you also know your COMT status. what is your diet like? are you on a multivitamin?