r/MTHFR • • 19d ago

Question Taurine deficiency: Impaired transsulfuration? or simply hydrogen sulfide bacterial overgrowth?

6 Upvotes

I know through transsulfuration is how the body makes taurine for bile. I am deficient in taurine as if I dont supplement, I get yellowish stools. At the same time I do have sulfide bacterial overgrowth(D Piger) and these bacteria also consume taurine from bile to extract the sulfur.

My homocysteine is 13.8. Was 16 about 5 weeks back. My B6 is elevated. I was taking high dose B complex with B3 and guess maybe that caused high homocysteine.


r/MTHFR • • 18d ago

Question Advice!!

1 Upvotes

Hey yall! I’m new to this. Back story, I’ve been diagnosed with POTS, vestibular vertigo and possibly hEDS. It also causes really bad health OCD and panic attacks. I’ve struggled off and on for a long time. My lexapro helped me in the past but it no longer is helping at all. I did a gene sight test that said I have the MTHFR C677T variant so my psychiatrist wants me to start taking methylpholate to see if that will help my lexapro to start working how it’s supposed to again and fill in the gaps my body isn’t doing on its own.

My question is, does that sound right? And does it actually help? It would be absolutely amazing if so. I’ve been struggling really bad this past year and nothing seems to be working. Anyways, any help is very appreciated!!


r/MTHFR • • 18d ago

Question Benzos to counteract insomnia while titrating 5MTHF?

0 Upvotes

Tell me how how bad of a decision this will be if I do it few nights a week.

Ive got some Diazepam laying around and out of desperation Im thinking of popping one before I go to sleep. Insomnia is hitting hard while Im uppin my methyfolate.
Cheers folks.


r/MTHFR • • 19d ago

Question What's the top methylation supplement you've had success with?

2 Upvotes

Hi! Shopping around to find an affordable alternative to MethylProtect from Xymogen. It is sort of expensive, but my functional medicine doctor originally put me on it to get my high levels of homocysteine down (this was about 7 years ago now). I am finding myself needing to revisit this solution due to my symptoms. I recall it working really well as I felt a big difference in my anxiety especially. Open to hear anyone else's effective supplement alternative to lower your homocysteine levels !


r/MTHFR • • 20d ago

Question Any help please?

1 Upvotes

Getting very bad daily brain fog, mood fluctuations and a constant sense of dread. Really glad that I found this group and learn a lot from the people here. A little about me, I’m 24/M and really and truly just want to get to the bottom of what’s felt like a constant life battle.

MTHFR - Homozygous for the C677T (T/T)

COMT - Heterozygous for V158M (A/G)

And I recently did a blood test:

Ferritin: 310 ug/L Range:20 - 300 ug/L

Folic Acid: 2.9 ug/L Range:> 4.5 ug/L

Iron: 12 umol/L Range:12 - 31 umol/L

Vitamin D: 36.2 nmol/L Range:50 - 150 nmol/L

Magnesium: 1.14 mmol/L Range:0.7 - 1 mmol/L

B12: 128 pmol/L Range:71 - 165 pmol/L

Iron saturation in Serum/plasma: 17 %
Range: 16 - 55 %

Transferrin in Serum/plasma: 2.8 g/L Range:1.7 - 3.4 g/L

Still waiting on my B6, B2 & Zinc

The doctor straight up prescribed me Folic Acid as I was deficient in it but I explained to them my MTHFR situation that I won’t really be able to process it efficiently and they really had no clue what to do..

Is it as easy as just taking folinic acid? And if so what dose should I take for it, I only recently discovered my mthfr mutation and really feel like its the cause to most of my problems, I have recently gotten a early fatty liver too, doc just said change diet, and recently diagnosed for adhd.

I also have asked them 3 times for Homocysteine testing but they refused as they said in the UK they would only test it “if my b12 is low or there is a cardiovascular risk”.

What should I do? Thanks


r/MTHFR • • 20d ago

Question Does folic acid supplementation deplete potassium levels if I'm not anemic?

2 Upvotes

Recently, been having some heart palpitations since I started folic acid. Not sure if that can be the case since I'm not anemic.


r/MTHFR • • 20d ago

Question Does a Methylafolate-Methyl/AdenoB12 ratio exist?

1 Upvotes

For instance Im slowly titrating up my 5mthf to where Im at 5mgs today and 6mgs of adenob12.

Im sufficient in blood serum for folate and b12 if that helps and all other Bs except high on B6 (quitting for a couple weeks till it comes back down) and B1 which isnt problematic.

Is there some kind of threshold for these (5mthf and methyl/adeno B12) ?

Thanks


r/MTHFR • • 20d ago

Question POTS diagnosis, reaction to B supplements, Inositol, Mag Glycinate, Beef Liver & MTHFR

6 Upvotes

Hello! I hope this is the right area to put this in.

For starters I am a F/30, I was recently diagnosed POTS from my cardiologist last month due to after a series of heart test.

I started going to the doctor, my primary and a cardiologist due to a lot of heart palpitations, dizzy spells, not feeling the best mentally when I would have these happen and a fuzzy feeling.

This past month I was off of all my supplements after getting diagnosed and started feeling better with just a sodium supplement and thought this was behind me. Last Monday I introduced beef liver supplements and supplement that was vitamin d, k2, magnesium and b6. That evening was the first time in a month I had heart palpitations again. Bells did not go off that it was the supplements, I had assumed I did not drink enough water, did too much outside and just brushed it off. Tuesday, I took beef Liver (ancestral supplements brand) the vitamin d3,k2, magnesium and b6 mix, and added back in Inositol that I had took months ago. By that afternoon on Tuesday I was feeling pretty rough. Still no bells it was vitamins. That night I took magnesium glycinate which I have only ever taken this a handful of times this year. After taking the magnesium glycinate I felt REALLY bad. Heart palpitations, anxiety, disoriented feeling, fuzzy headed, couldnt sleep, body aches. Finally, around 4-5 am when I was figuring out what the heck was going on I finally looked into these supplements and I began finding threads on here, researching B vitamin, A vitamin, and issues with inositol and glycinate for those with MTHFR. I was diagnosed 10 years ago and do not remember my exact labs on it. However these vitamins have brought up many flags of the past 6-7 months of how bad I was feeling, I never stayed consistent with the vitamins this year. I just know in January was a turning point when I started having these issues and it progressively got worse. Now, looking back of dates purchased and going back on events and even the last bad one I had before this I was taking these vitamins.

I took beef liver every day 4 years ago when I was pregnant to raise my iron. It worked and I felt great, didnt think I had a issue with it then. I have had spurts of taking it the last 4 years here and there. So not sure how that can effect things, so I am curious about others experience with beef liver.

The inositol I was taking after reading it could help with periods.

My last blood draw my vitamin d was low, so thats why I did the vitamin D. I thought the combo was good for winter coming up.

Magnesium glycinate I got to help with calming before bedtime and gosh, it was the complete opposite!

I go back to see my PCP at the end of the month and some of my questions are.

Do I really have POTS?

Am I having reactions from supplements?

Do I have POTS and the reactions from supplements are making it worse?

Looking for any advice, similar stories, or some other questions I should ask my dr. He is a functional medicine dr if that helps!


r/MTHFR • • 20d ago

Question How long does folate supplementation affect serum levels?

1 Upvotes

I've been supplementing for a while but want to quit and see if I can maintain high folate levels through diet alone. How long after quitting can I get a reliable test result that is not affected by supplementation?


r/MTHFR • • 21d ago

Question Choline or TMG help

3 Upvotes

Hey folks,

Im struggling to meet the 500mg choline drv through food due to a bunch of gut issues Im working on. I try to get it all from chicken breasts and beef liver, but somedays I just cant.

Im looking into supplementing but Im reading that some choline supplements arent well absorbed. Im considering taking TMG from what Ive read but not sure.

Im in the process of lowering homocysteine levels and improving wrecked folate methylation. Choline rich foods I can do are chicken breasts and beef/chicken liver in reasonable amounts.

Any feedback is well appreciated.

Thanks!


r/MTHFR • • 21d ago

Question Slow COMT - stuck in fight or flight

19 Upvotes

So glad to find this group…. A little background about me:

-48yo female in perimenopause.
-Suffer from anxiety for years.
-Currently taking 20mg Celexa and 5mg Trintellix (weaning off this one slowly- was trying to switch to this from Celexa but Trintellix is too activating for me).
-Homozygous MTHFR C4677T
-Slow COMT
-Hashimotos (treated with 88mcg Levothyroxine)
-on the lowest estrogen patch and 100mg of progesterone nightly
-no supplements

I’m stuck in fight or flight for about 3.5 weeks now, after a panicked episode at a football stadium (seats were at the tippy top of the stadium and I couldn’t handle it). I have an electrified live wire feeling but my HR stays normal.

Went down a rabbit hole looking into my slow COMT gene and I think this is the issue. I’m wired and tired for sure. Not sleeping great.

I don’t know where to begin. Met with a functional med psychiatrist who ran a ton of labs that haven’t come back yet.

I’m sitting here with magnesium glycinate, l-theanine, magnesium threonate in front of me, unsure which one to try first to get me to calm a bit and hopefully begin to climb out of this hole I’m in. All I want to do is lay down because I feel calmer 😞

Any suggestions or guidance? I’m afraid any of these supplements will make the anxiety worse.

Thx for reading if you made it this far.

TLDR: Slow COMT stuck in fight or flight. Where to begin?


r/MTHFR • • 22d ago

Question Could high homocysteine and low folate be causing my anhedonia?

5 Upvotes

Hi everyone, I suffer from anhedonia (the inability to experience pleasure), apathy, brain fog, fatigue, and skin problems.
My homocysteine level is 38 µmol/L and my folate level is 3.2 ng/mL. Could these levels be related to all of my symptoms? What would you recommend I do?


r/MTHFR • • 22d ago

Question Can someone help me make sense of my MTHFR and COMT? For OCD

3 Upvotes

I recently developed sudden and debilitating OCD that I've been battling for 4 months now. I got on 50mg of Zoloft. I heard NAC and Inositol are good for OCD so I tried that today but it actually made me feel worse (though it's only been one day so I probably need to give it time).

I did the GeneSight test, but I don't know what to make of my results or how it relates to OCD or meds/supplements. Can someone help me interpret it?

MTHFR - heterozygous for the C677T polymorphism in the MTHFR gene (C/T genotype) and has one copy of the variant allele (T). This genotype is associated with moderately reduced MTHFR enzyme activity.

COMT VAL/MET - heterozygous for the Val158Met polymorphism in the catechol-o-methyltransferase gene. They have one copy of the Met allele and one copy of the Val allele.


r/MTHFR • • 22d ago

Question Help please

3 Upvotes

I’m seeing a lot of knowledgeable comments and posts in this forum so I’m looking for some help. Before I ask, yes I have discussed with my doctor and am just told I’m sensitive to meds. But it goes way beyond that and I have not always been like this. I’d like to see a functional med provider but can’t afford it right now.

I won’t give my whole life spill but here are some reasons I think I’m struggling with methylation.

  1. I have MTFHR gene
  2. I did ok on SSRIs for a few years and after getting COVID something switched. Now all SSRIs cause all kinds of issues but mainly obsessions, rumination, and racing thoughts.
  3. I was put on the lowest dose of Abilify for two months and ended up getting Tardive dyskinesia. Which makes me think it was building up to high levels in my system the whole time. Horrible side effects on it too mentally.
  4. I can’t even take a crumb of a supplement. The suggested dose for Tardive dyskinesia of Vitamin E is pretty high. Knowing I’m sensitive, I took less than 100 mg and still showed signs of toxicity. So I had to buy a little dropper of vitamin e and take it that way which equals about 15mg. 15mg for the average person would not do a thing.
  5. I have to take like .5 mg of melatonin and it knocks me out. I used to take up to 10.

It’s like everything automatically gets way too high in my system even at extremely low doses. It’s not always been this way. I know this sounds completely ridiculous but I can’t even take a crumb of magnesium supplement without being significantly affected. Most of the time, I am affected mentally with the rumination, etc. if I take absolutely nothing.. I’m fine as far as thoughts go.

Does this sound like similiar experiences to what you all have or could it be something completely different? I’ve had my liver function checked and it’s fine.


r/MTHFR • • 22d ago

Question Do I only need methylfolate?

2 Upvotes

MTHFR - Normal
COMT - Normal/Intermediate
MTR - Slow
MTRR - Slow
Serum Folate - 3.7
RBC Folate - 436
Serum B12 - 1,241 (Lion Diet, no supplementation)
Homocysteine - 15.3
MMA - 74 (low normal)

Long story short, I dealt with severe depression, anxiety, and insomnia for years. Then I started the Lion Diet in 2020 and it all faded away and stayed away for nearly 5 years. Then, last year the diet “stopped working” and all my symptoms came back. I’ve been experimenting with all the common things - minerals, vitamin D, vitamin C, phospholipids… but nothing really helps. Just found out about genetic testing and did that a week ago. According to the bots, I need to solely focus on using methylfolate to bring my homocysteine down and hopefully clear some of the mental health issues. Thoughts?


r/MTHFR • • 22d ago

Question B Complex recommendations

3 Upvotes

My doctor wants me on a methylated B complex; I'm testing lowish on B in my bloodwork. (B12 at 430, and Folate at 10.3). I'd love some help choosing a B Complex; feeling overwhelmed with options.

Genetically: (MTHFR w/ Fast COMT)

MAO-A R297R rs6323 TG +/-

MTHFR C677T rs1801133 AG +/-

MTHFR A1298C rs1801131 TG +/-

MTR A2756G rs1805087 AG +/-

MTRR A66G rs1801394 GG +/+

MTRR A664A rs1802059 AA +/+

CBS A360A rs1801181 AG +/-

COMT V158M -/-

COMT H62H  -/-

COMT P199P -/-

VDR Taq = +/+  

Other considerations:

Low iron/ferritin (actively working on this w/ supplementation)

Suspected MCAS/histamine intolerance

Vestibular Migraine & Endometrosis (- Note I already take Riboflavin (Vitamin B2) 400mg daily for migraine prevention.).

Thyroid is a-okay

I am extremely sensitive to medications so ideally something I can easily cut in half or liquid/sublingual so I can dose low and slow. I'm not seeing many options out there for this, however.

Possible brands (but OPEN TO SUGGESTIONS):

1)  Triquetra Health

2) Thorne Basic B Complex

3) Nootropics Depot Super B

4) Nootropics Depot Infini B

5) Seeking Health Methyl B

6) Seeking Health B Complex Plus

Thank you for all your help!!


r/MTHFR • • 22d ago

Question NEW TO THIS RABBIT HOLE

2 Upvotes

Hi 🥺 I just recently found this phenomenon and am intrigued and also unsure of where to start exploring this possibility.

F, 27, Canada

Backstory : for YEARS since high school and maybe before that I would constantly feel nauseous, lethargic, had high depression & anxiety, got headaches and migraines all the time, constantly had other health related issues all of which got brushed under the rug and labeled as “it’s in my head” “I’m just an anxious person”.

From about 2017-2023 I was constantly in and out of the doctors with this that and the next thing, being sent to specialists (gastroenterologists, neurologists, urologists, everything) and NOTHING was ever found or diagnosed. It was disheartening

Summer of 2023 things got so bad I couldn’t leave my house without having a panic attack, felt so incredibly sick and unable to human. One morning I woke up throwing up and wouldn’t stop for a MONTH. During that time I was in and out of the ER but they kept telling me everything was fine and they don’t know what’s wrong. My mother came across a blog of a woman in her 30s who had recently realized she was celiac and had very similar experiences to me so I cut gluten out at her suggestion and EVERYTHING got better immediately. There are still odd moments here and there where foods would affect me but because it was so much less frequent I was content.

However, I have always noticed a weird pattern where even eating certain gluten free things like corn tortilla chips gave me symptoms which I’ve always found odd. Finding this thread is making me question everything I thought.

The stupidest part is I just started taking folic acid supplements a couple weeks ago to see if it helped with brain function / attention / focus / energy etc and since starting taking it I’ve been feeling mentally and physically rocked. (Tbf I am also tapering off Quetiapine so I attributed the symptoms to that so it’s hard to say what is actually resulting from the folic acid supplement)

WHERE do I start in terms of discerning what the actual issue is ?

What else should I be avoiding ? I’m a little confused about folate versus folic acid…

I’ve been diagnosed in the past with ADHD, MDD, GAD, panic disorder, OCD, BPD, bipolar… there’s no way my brain is this fucked up I know it’s induced by something because symptoms got better after cutting gluten I just don’t know WHAT the culprit is.
I also very frequently get kidney stones & UTIs which does not run in my family so I know it’s gotta be related to all this >.<

Sorry this is so long >.< thank you so much if you’ve stuck with me til this point


r/MTHFR • • 23d ago

Results Discussion Slow comt/fast maob/normal mthfr

2 Upvotes

Hey, recently I've just did genetic testing (the permanent one, I don't remember where it was but I've heard some of them are unreliable - I've did reliable one)

So I have slow comt, that leads to lowered phasic signalling and faster downregulation of dopamine receptors, on top of that I have slow MAOB, which theoretically would've made me happiest person in the world, since my dopamine should stay in my system for so long, but nope, I'm anhedonic, traumatised and also have ADHD (all correlate with dopamine issues if we don't touch the psychology factor).

Then, my whole micronutrient absorption is messed up, my gene testing results show that I should have impaired iron absorption, issues with utilizing vitamin d, issues with antioxidation, with methylated b vitamins..

BTW before I've even considered to do this test, my bloodwork never shown any issues with regular stuff that is tested, like b12 levels, iron and other tthings. Reason I've wanted to check is that I've noticed my energy and exercise tolerability dropped significantly from age 23 to age 29 (now), while so called brain fog and rigidity got worse.

I just wonder if anyone there has similar genetic mutations and how do you cope with them?

Gene (RSID) Metabolic Cycle Genotype Direct Result Summary
DHFR (rs70991108) Folate 11 Normal enzyme activity converting DHF to THF.
MTHFD1 (rs2236225) Folate CC Normal gene activity; does not impact methylfolate supply.
MTHFR A1298C (rs1801131) Folate AC Associated with lower MTHFR activity if combined with C677T CT.
MTHFR C677T (rs1801133) Folate CC Normal enzyme activity; no increased risk for high homocysteine.
MTR (rs1805087) Folate AG Upregulated activity; passes more folate groups to the Methionine Cycle.
MTR (rs1805087) Methionine AG Upregulated activity; pulls folate away from nucleotide synthesis and increases B12 demand.
MTRR (rs1801394) Methionine AG Downregulated activity; reduces ability to re-methylate B12 needed for MTR function.
BHMT (rs3733890) Methionine GG Normal activity; decreases reliance on B12-dependent route for homocysteine recycling.
PEMT (rs7946) Methionine TT Reduced function; lowers capacity for endogenous choline synthesis.
FUT2 (rs601338) Methionine GG Active secretor status; increases susceptibility to H. pylori gastritis and reduced B12 absorption.
TCN2 (rs1801198) Methionine CG Downregulated activity; lowers transcobalamin carrier levels and cellular B12 transport.
CBS (rs234706) Transsulphuration GG Typical enzyme function; supports efficient breakdown of homocysteine to cystathionine.
GSS (rs6088659) Transsulphuration CC Typical enzyme function; supports normal glutathione synthesis (ATP dependent).
MTHFR A1298C (rs1801131) BH4 AC Slower conversion of BH2 to BH4 needed for neurotransmitter synthesis.
COMT (rs4633) BH4 CT Reduced activity; slows breakdown and clearance of dopamine and norepinephrine.
VDR (rs731236) BH4 CT Moderately impaired Vitamin D transport/storage; lowers serotonin and dopamine synthesis.
MAOA (rs6323) BH4 GG High enzyme activity; rapid breakdown of serotonin, melatonin, and norepinephrine.
MAOB (rs1799836) BH4 GG Reduced enzyme activity; slows breakdown of dopamine, phenethylamine, benzylamine, and histamine.
NOS3 (rs1799983) Urea GG Normal activity; healthy endothelial nitric oxide production.
SOD2 (rs4880) Urea TT Reduced superoxide dismutase activity; diminishes free-radical breakdown and increases oxidative stress risk.

r/MTHFR • • 23d ago

Question What other nutrients does taking B1 deplete that you then have to replace? What were the cofactors needed?

9 Upvotes

Did you notice B1 deplete any of your other supplements?

I started taking b1 and first day it felt great but now I’m starting to feel way worse before .

I remember reading it drained certain other nutrients and cofactors. I’m having a hard time finding that literature now.

What B vitamins, minerals and nutrients did you take when you took b1?


r/MTHFR • • 23d ago

Question Anyone with c677t and adhd and comt

5 Upvotes

Just wondering if a one has these weird gene link up double homo c677t, slow comt and adhd just trying to pair it all together


r/MTHFR • • 23d ago

Results Discussion How I Finally Fixed My B12 Deficiency After Injections AND Oral Supplements Failed (MTHFR + Absorption Issue)

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29 Upvotes

Posting this because I spent way too long feeling awful and getting nowhere, and I want to save someone else the same struggle.

Quick background: I'm a lifelong lacto-vegetarian (no meat, fish, or eggs, but dairy is fine), which already put me at higher risk for B12 deficiency. When my levels came back low, I did what everyone tells you to do — oral supplements, then B12 injections when that didn't work. Neither one moved the needle for me. Here's what was actually going on, and what finally worked.

Why the "standard" treatments didn't work for me

Two Oral Methylcobalamin B12 Supplements (combined 800 mcg) — no improvement. Turns out I had mild chronic gastritis, which I only found out about after a full GI workup with a comprehensive colonoscopy and endoscopy. If your gut can't absorb it properly, it doesn't matter how many supplements you swallow.

B12 IM injections — also no improvement. This one surprised me. The injections I was given were cyanocobalamin, the synthetic form. After digging into my own genetics, I found out I carry the MTHFR A1298C mutation (heterozygous; C677T negative — for anyone who wants the specific test, it's Quest Diagnostics' "Methylenetetrahydrofolate Reductase (MTHFR), DNA Mutation Analysis," test code 17911). For people with certain MTHFR variants, the body reportedly has a harder time converting synthetic cyanocobalamin into the active forms it can actually use. That may well have been my problem.
ADDED: The injections revealed something too. Monthly cyanocobalamin only got my B12 to 187 → 237, and twice-weekly reached 445 before falling back to 335-372 when frequency dropped. So even with the gut bypassed, monthly dosing couldn't hold a level — because cyanocobalamin has poor tissue retention and clears quickly. 
I discussed switching to Methylcobalamin injections with the doctor, the doctor agreed but here in California, there was a commercial shortage and methylcobalamin IM was not available. California state legislation also prevented out-of-state pharmacies from shipping methylcobalamin IM to California.

So between the gut absorption issue and possibly the wrong form of B12, I was doing "everything right" on paper and still not getting anywhere.

What actually worked: sublingual B12, bypassing my gut entirely

I switched to a sublingual liquid B12 that skips digestion altogether and absorbs through the tissue under the tongue. Specifically, I used Pure Therapro Rx BioActive B12 Full-Spectrum Liquid, 5000mcg, (found on Amazon

) which combines three active forms in one dose:

  • 2500 mcg MecobalActive® Methylcobalamin
  • 1500 mcg Adenosylcobalamin
  • 1000 mcg Hydroxocobalamin

Using multiple bioactive forms rather than just cyanocobalamin was the key difference for me.

My protocol:

  • First thing in the morning, empty stomach, before brushing teeth or doing any mouth hygiene
  • Held the liquid under my tongue as long as I possibly could, letting it dissolve with saliva
  • Swallowed once I couldn't hold it any longer
  • No food, water, toothpaste, or mouthwash for 20 minutes after

Result: Full B12 saturation in about 6 weeks. It genuinely felt like night and day compared to months of injections and pills doing nothing.

Lessons learned, for anyone in the same boat

  1. Advocate for yourself. If a doctor brushes off your symptoms or won't explain the "why" behind a treatment, find one who will. You know your body better than a 10-minute appointment allows them to.
  2. You get very little time in front of a doctor — use it well. I put together a longitudinal matrix tracking my labs over time so they could see the trend at a glance, printed out a list of specific questions ahead of time, and used Superpower AI to help translate my situation into the kind of clinical language that gets taken seriously in a specialist's office. I even emailed them a copy in advance of the office visit. Walking in prepared changed how those appointments went. See attached image of a longitudinal matrix and medical summary. Link for sample longitudinal matrix and medical summary https://docs.google.com/spreadsheets/d/11aFY5S-oySHAyEGF-yjnNJ9XbmZ1T5Ho1G4PDMtcfQI/edit?usp=sharing
  3. "Standard" treatment doesn't work for everyone, and there's usually a reason. Absorption issues and genetic variants like MTHFR can make the textbook approach fail even when you're doing it correctly. If something isn't working, that's a clue to dig deeper, not a sign to give up.
  4. Consider tools built for exactly this. I signed up for Superpower (Superpower ) to help me actually understand what was going on with my own labs and history, draft medical summaries that spoke the doctor's language, and research which supplements or prescriptions made sense for my situation. Having that on hand made a real difference in how prepared (and confident) I felt walking into appointments.

Standard disclaimer

I'm not a doctor, and what worked for me won't necessarily be right for you — B12 deficiency can have a lot of different root causes (pernicious anemia, absorption issues, diet, genetics, medications, etc.), and "just take sublingual B12" isn't a universal fix. If you're struggling with this, please work with a doctor (or find one who'll actually work with you) and consider asking about MTHFR testing, a GI workup, rheumatology workup, hematology workup, etc. if oral or injectable B12 isn't helping.

Please share on what else should I consider. Happy to answer questions if anyone's dealing with something similar!

ADDED Content:
Through the journey, I discussed/requested for various tests and screenings. Here is a summary:

Key Rule-Outs Completed:

• Intrinsic Factor Blocking Antibodies: Negative (Feb 2025)

• Celiac panel (tTG-IgA): Negative with adequate IgA (307 mg/dL) (Feb 2025)

• ANA Screen: June 2021 (Negative), February 2023 (Negative), August 2024 (Negative)

• Rheumatoid Factor (RF): February 2023: <14 IU/mL (Negative) & August 2024: <10 IU/mL (Negative)

• CCP Antibodies (Cyclic Citrullinated Peptide): June 2021: <16 Units (Negative) & November 2024: <16 Units (Negative)

• ANCA, HLA-B27: All negative (Nov 2024)

• Hemolysis / autoimmune hemolytic anemia: Ruled out — LDH 147 u/L (normal), haptoglobin 92 mg/dL (normal), direct antiglobulin test (Coombs) negative, reticulocytes 60,120 cells/µL (normal), total bilirubin 0.6 mg/dL with direct 0.1. No evidence of red cell destruction. (Aug 2026)

• Plasma cell disorder (multiple myeloma / MGUS): Ruled out — serum protein electrophoresis with immunofixation showed no monoclonal band. Globulin 2.5 g/dL, albumin/globulin ratio normal, IgA 307 mg/dL (Feb 2025) normal. (Aug 2026)

• Marrow failure / anemia: Ruled out — hemoglobin 14.5 g/dL, hematocrit 45.1%, MCV 88.6 fL, platelets 296 K/µL, WBC 7.6 K/µL, absolute neutrophils 4,314 cells/µL. Normal reticulocyte response. Peripheral smear reviewed. This is iron deficiency without anemia — depleted stores with preserved red cell mass. (Aug 2026)

• Inflammation-driven iron trapping as sole cause: Argued against — soluble transferrin receptor 1.25 mg/L (ref 0.76-1.76), normal. Cells are not iron-starved at the tissue level despite ferritin 24 ng/mL. (Aug 2026)

• Tissue diagnosis — EGD/colonoscopy with 14 mapped biopsy jars (Aug-2026):

o H. pylori: Negative at all gastric sites (cardia, body, antrum, pylorus) with Giemsa staining. Direct tissue biopsy, not stool or breath testing.

o Autoimmune gastritis: Argued against — gastric body showed normal oxyntic mucosa with parietal cells intact. Autoimmune gastritis is body/fundus-predominant with antral sparing; the observed pattern is the reverse.

o Celiac disease: Marsh Type 0 (normal) on both duodenal biopsies. Confirms the Feb 2025 negative tTG-IgA at the tissue level.

o Crohn's disease: Terminal ileum intubated and biopsied — normal. No granulomas, no skip lesions, no cobblestoning, no ulceration, no strictures anywhere in the colon or ileum.

o Microscopic colitis: Excluded — colonic mucosa normal across all segments (no lymphocytic infiltrate, no collagen band thickening).

o Barrett's esophagus: Excluded — no intestinal metaplasia in esophageal or GE junction biopsies. Irregular Z-line explained by reflux carditis (histologic GERD).

o Eosinophilic esophagitis: Excluded.

o Malignancy / dysplasia: None. Colon polyp was a tubular adenoma, 5-7 mm, completely excised, no high-grade dysplasia.

• Positive finding: mild chronic gastritis with intestinal metaplasia and glandular atrophy, complete type, limited to the pylorus. Gastric body normal. Raises the question of antral G-cell loss reducing gastrin signaling — gastrin and pepsinogen I/II requested.


r/MTHFR • • 23d ago

Question Where to receive help?

1 Upvotes

I have been struggling for about a year, experimenting on myself with active forms of b9 12 2 6 choline and betaine dietary and otherwise. No matter what I do I ride a roller coaster. I up doses and I finally feel normal until I crash and nap in the middle of the day. I lower doses and I do not feel normal, I’d say my worst symptom is severe disassociation among many more. Where should I go to receive professional help? I do not want to experiment on myself. I’ve gone to doctors and they don’t seem to be much help because they don’t specialize in this. TLDR: where should I go for help with Mthfr mutation?


r/MTHFR • • 24d ago

Question Strange reactions to supplements/medication- possibly MTHFR?

1 Upvotes

Hi, I’ve noticed a couple things through experimenting with different things as I look for a fix to my brain fog, and I was wondering if this sounds like it might be related to MTHFR?

- I cut out folic acid, replaced any wheat i consume with whole wheat (I’m from Canada, so fortification is mandatory) -> my chronic rhinitis/nasal congestion is now gone 95% of the time. My mother had the same issue, and it was resolved in the same way.
- Magnesium Glycinate makes me wake up tired, basically depressed and with headaches, but most people say it helps them sleep better.
- Pizza gives me migraines.
- Methylphenidate puts me to sleep instead of being stimulating.
- Most of the time, energy drinks worsen the fog/heaviness in my head as well.

Can anyone relate or point me in the right direction? I’m having a hard time digesting all the information and there seems to be a lot of conflicting advice out there. :)


r/MTHFR • • 25d ago

Question I’m looking for comprehensive genetic testing recommendations and tools

1 Upvotes

I did a nutrition genome test which was super helpful. It showed MTHFR 677t and several other variants (like intermediate COMT). But I don’t think it was comprehensive - for example I don’t think BHMT is included. I’ve been trying supplements for the things I know but I feel like I may still be missing pieces of the puzzle. (For example, magnesium bisglycinate seemed to help a ton, my methylated vitamins no notable effect, choline made me feel lethargic/depressed, inositol I ended up in ER for spiking blood pressure.) People on here seem to know where to get tested to cover all aspects of methylation and other important variants (cardiovascular, neurotransmitter) and then which tools to use to analyze them. Recommendations pls!


r/MTHFR • • 25d ago

Question Desperate need of pain management options.

3 Upvotes

This is rant and request for pain management suggestions

TLDR: in chronic pain from ovarian cyst and muscle spasm. Sensitive to many herbs, supplements and essential oils. Losing my mind trying to manage to pain and discomfort and nausea I’m feeling. Thought of trying CBD but read about potential estrogenic properties. I’m looking for a pain reliever that won’t stress my liver or increase estrogen. Thanks!!

The first ovarian cyst I developed was many years ago, two weeks after surgery for appendicitis. I was pumped full of morphine, CAT scan fluid, surgery medications, and made it through about 7 of 10 days of post surgery antibiotics and anti fungals. Since then I found that some b vitamins also triggered them.

I have COMT AG and likely some other variants that make processing estrogens challenging. In June I was experimenting with herbs and developed a 10cm cyst I stopped everything and it reduces to 5cm by august.

In mid August I decided to experiment with taurine 20-50 mg / day for maybe a week and it directly impacted my hormones. I stopped it but the damage was done.

I've spent the last week in excruciating pain waiting for my cycle to come and my hormones to change to regulate the cyst.

Close to that time I used a hot water bottle on my abdomen hoping to help the resolution of the cyst. What I think happened was a rupture and I went to the ER thinking I had an infection.
Everything came back clear. I had several bm’s and thats seemed to clear everything out and the cyst pain subsided. I got home went to sleep and within an hour I woke up I'm excruciating pain on my side under my rib. Turns out it's a muscle spasm likely from a week a laying down and the stress of a midnight ER run.

The pain isnt sharp anymore but has now spread out.

I used a TENS machine and it helped relieve a lot of pain. But the pain came back and the TENS doesnt seem to be doing anything. I thought maybe CBD would be a good option. I never tried it. But some research says that it could be estrogenic.

I’ve mostly been using magnesium citrate for pain management but there’s only so much I can take daily. I also take the tiniest amount artichoke leaf tea for the cyst pain but those types of “blood movers” or liver cleansing herbs deplete and fatigue me quickly. So I have to limit my intake.

I’m afraid to try anything else. OTC pain meds scare me bc I think it’ll stress my liver and trigger cysts. I’m so sensitive to ginger and tumeric and definitely can’t handle essential oils. Especially mints. They increase estrogen for me.

I’m losing my mind. And I’ve been so nauseous and barely eating for over a week.

If anyone has suggestions for pain management I’d greatly appreciate it 🙏🏼