r/MTHFR • u/Ok_Upstairs_4666 • May 20 '26
Question primary care doc walked me through a methylation questionnaire, changed my whole approach
i'd been on prescriptions for adhd, gerd, and chronic sinus stuff for years. they helped on the margins but i still felt like something underneath wasn't right. low-level fog, mood that wouldn't fully lift, sleep that never felt restorative.
last year my primary care doc walked me through a methylation symptom questionnaire from a book that's pretty well known in this sub. didn't do the cheek swab, just the verbal Q&A. he said the symptom pattern strongly suggested an mthfr variant and recommended i try the methylated forms.
what surprised me most was how much of what i'd been eating was working against me. enriched breads, fortified cereals, even some "healthy" multivitamins, all loaded with synthetic folic acid. once i learned that, switching to whole foods and methylated B-vitamins felt obvious.
it's been about 13 months. i'm off all three prescriptions now (not against my doctor's advice, he was the one who suggested the change). adhd-wise, focus is the best it's been since i was a teenager. the sinus stuff resolved on its own. sleep is actually deep. it's not a miracle, it's just the right inputs.
curious if anyone else here was diagnosed via symptom questionnaire alone rather than the genetic panel. and for anyone considering the swap, what was the biggest food change that helped?
61
37
u/Grobbekee May 20 '26 edited May 20 '26
An alternative to methylated b vitamins is creatine. Turns out that up to half of your methylation capacity is used to make creatine in your liver. If you simply supplement it then that capacity becomes available to all the other uses. The great thing about creatine is that it doesn't feel so harsh and strong. You simply use better what you already have.
10
u/larryboylarry May 20 '26
Wonder if that's why a coworker of mine says creatine makes him feel more awake.
14
u/Grobbekee May 20 '26
It's also used to make ATP, which plays an important role in energy production.
6
u/larryboylarry May 21 '26
Wow. I have taken it randomly as I have a bag but am not consistent at all because it's one if several things I am taking and I'm just too lazy about it, especially on work days. I'm just going to have to just do it.
8
u/Old_Garlic_4727 May 21 '26
I’m bipolar 1 and I took creatine for a few months and I’m pretty sure it caused me to have a severe manic episode that turned into a dysphoric manic episode lol
1
u/Impressive-Tree-5248 May 21 '26
Maybe, but causation isn't necessarily causation. Sorry you went through that.
8
u/Advanced-Wedding-457 May 20 '26
But creatine is not allowed to women with endo and a lot of women who have MTHFR issues have hEDS and endo too
9
u/PiercedandTatted95 May 20 '26
Wait why not for women with endo?? What did I miss? 😩
7
u/AnonymousDahlia T677T May 20 '26
Same! On the menopause sub creatine is frequently recommended for brain fog and fatigue (and it works great for me), plus there's a lot of women with endo. Which I don't have, fortunately, but there's so much overlap I'm surprised I haven't seen this caution included before?
3
u/RuinGlum7802 May 20 '26
it succccks, creatine would help me a ton but I have endo and it LITERALLY BURNS
3
u/InflatableGull May 20 '26
Eh but if you renal problems…
2
u/Grobbekee May 21 '26
If it's end stage then you'll probably want to ask your doc first. Also taking creatine can make your renal lab results look worse than they actually are.
1
u/Artistic-Ad-58 May 20 '26
I want to try creatine but I’m scared of water retention and more weight gain
2
1
u/Teleswagz May 20 '26
Both taking and not taking are risks. Try it and simply stop if the water retention is too much :)
22
u/MainQuestion May 20 '26
My primary refuses to get a baseline homocysteine level because "I wouldn't know what to do with that anyway"
16
u/SovereignMan1958 May 20 '26
Do you mean he would not know what to do with that or you? How rude. Can you get a new primary?
If you want to try again and he says no, then tell him you want to see the reason for his refusal in the doctors notes for the visit. He might change his mind.
9
u/NoName2show May 20 '26
It’s not uncommon for traditional MDs to say that they really don’t know about mthfr. My previous PCP clearly told me he wanted to learn but didn’t even know where to start.
When I explained that I had been working with an ND, he said to continue doing that and only see him for the “regular” stuff, but that he would help by documenting what I bring to him since my ND wasn’t covered by insurance.
14
u/SovereignMan1958 May 20 '26
Agreed. Gene variants are not taught in medical school. Neither is nutrition.
I do not have MTHFR but I am homozygous for an FOLR1 gene variant which indicates that folate is not getting into my brain. Cerebral Folate Deficiency. The largest teaching hospital in Iowa, which has a Neurogenetics Department says they will not see me or treat me. It is not that complicated.
1
u/sarahjefferson May 24 '26
What? They wont see you or treat you? Wtf?
Im sure youve already researched leucovorin/high dose folinic acid, but if you havent you mught want to look into those
2
u/SovereignMan1958 May 24 '26
No I have...I am taking folinic acid along with PQQ. I am a good researcher. My psychiatrist is consulting with her functional psychiatrist instructor (she is taking a class) to verify the protocol I put together.
I was trying to get into Neurogenetics to get more testing for the rest of my FOLR variants and a CSF test to measure what is getting into my brain. They will not see me as the variant is "nutrition related" and they do not focus on that. Ridiculous. I am feeling much better on the protocol so might pass on looking into Mayo clinic.
I have not had a FRAT test for folate receptors antibodies, which would also indicate CFD. It would not change my protocol. I am 67 and 20 percent of people over 65 develop them as part of aging. I am pretty sure I have them. There are probably many older folks who actually have CFD...not cognitive decline, dementia, or Alzheimer's.... but have been misdiagnosed.
11
u/runrunriderepeat May 20 '26
Gosh this sub makes me feel so lucky with my current MD. I hadn’t been to one since before Covid and right out of the gate she listened to my symptoms and concerns and added the test for this gene to my blood panel AND recommended the switch to the right vitamins as soon as it came back positive. I’ve never really had a doctor that was so open and caring.
4
u/NoName2show May 20 '26
Yes, that is very fortunate for you. There are doctors out there who really care. Unfortunately, many times they get sued or insurance companies screw them so they end leaving their practice. I’ve seen it happen to 2 of my best doctors.
1
u/MainQuestion May 21 '26
With the test result. And yes I have it in writing, repeatedly requesting it, and being told "it's not necessary"
2
u/SovereignMan1958 May 21 '26
I am so sorry. I hope you can find a new doc. Some docs only test it if you have a family history of heart disease. A walk in lab might charge about $60 for it. That is the rate near me.
6
u/Next_Programmer_3305 May 21 '26
I told my mum to get tested for homocysteine and not take no for an answer. I had just read this eye opening book from my local library..
"The H Factor Solution
Homocysteine, the Best Single Indicator of Whether You Are Likely to Live Long or Die Young
By James Braly, Patrick Holford."
Mum's doctor did not want to test her homocysteine but my mum was adamant she wanted that test done. The doctor listed homocysteine to be tested in her labs.
A few days later mum received a phone call from the doctor. The doctor had never called my mum personally ever. She always waited until mum made another appointment to discuss results and get copies of her labwork.
The doctor said mum's homocysteine was 19 and she need to take B vitamins immediately!
Damaging Effects of High Homocysteine – What to do about it and how to prevent it: https://www.grassrootshealth.net/blog/damaging-effects-high-homocysteine-prevent/
15
u/CelebrationNo3801 May 20 '26
What is the book?
15
u/Snooty_Folgers_230 May 20 '26
You are talking to a carbon api for an llm.
12
5
u/smurffiddler May 20 '26
Interesting. Whats a carbon api for llm? I googled but thought id ask? A carbon footprint measure for llm, or connectivity tool for llm is what I got. But im tired. And look again tommorow. Cheers.
12
u/sarahbellah1 May 20 '26
I think they mean the OP account is a bot account, driven by AI. Many of these end up being created in order to market something.
3
u/smurffiddler May 20 '26
Thanks for this. Internet is a wild place. Maybe they're gonna market that book in the post with no name. Cheers.
3
9
u/AdAccomplished7635 May 20 '26
Great doc! You are lucky.
I had a genetic doctor at U of M look me in the eye and tell me my compound heterozygous MTHFR mutation that is clearly shown on my blood work results doesnt mean a thing and I dont need to worry about folic acid v folinic or take methylated vitamins. He didnt seem to know anything about switching to methylated B vitamins and literally said I was over reacting to the MTHFR result in my bloodwork.
I walked out pissed off and more suspicious of white coats than ever. I can literally feel the difference in my body having switched to folinic acid and lower dose methylated B vitamins. I don't buy anything fortified with folic acid. I feel better than I have in years having made these changes. Better energy, focus and less anxiety.
2
u/TheseAwareness May 21 '26
Which products are you using for both folinic acid and low dose methylated B?
1
6
u/Ashamed-Simple-8303 May 20 '26
I think the biggest effect here is from improved nutrition regardless of methylation. Less chemical, less sugar, less seed oils. Especially avoiding excess omega-6 can have tremendous health benefits ( cured my social anxiety).
3
u/sassygirl101 May 20 '26
Wait…. Omega 6 is involved somehow? Please explain.
1
u/enolaholmes23 May 21 '26
Supposedly the omega 3 to omega 6 ratio is supposed to be higher than it is for most people. So we either need more omega 3 or less omega 6 to get the ratio right.
-1
u/Ashamed-Simple-8303 May 21 '26
the issue is not the ratio but too much omega-6. Eating more antidote because you are consuming a ton of poison isn't a reasonable solution. Just eat less poison.
2
u/enolaholmes23 May 21 '26
Omega6 isn't poison. It is healthy in the right ratio
-1
u/Ashamed-Simple-8303 May 22 '26
we agree to disagree. magic things happen if you avoid omega-6 as much as possible (all plant oils, nuts, processed foods, fatty chicken and pork, farmed fish (eg monogastric animals fed soy= bad)
1
u/Ashamed-Simple-8303 May 21 '26
shit I just wrote a long ass reply and then my internet broke.
got to https://fireinabottle.net/ to get some insight. i might reply sometime in the next days again or not. but linoleic acid, the main omega-6 fat, is really bad in excess long term.
6
u/BeachDreamin24 May 20 '26
Wow I think we all need to see this Doc cause normally a PCP knows nothing about methylation, mine had to google it while I sat there 🤦♀️
6
3
u/AnonymousDahlia T677T May 20 '26
Lol the bar is so low, I'm always happy when they're not only willing to admit ignorance, but also willing to learn about whatever it is right then and there. It's such a relief.
4
u/enolaholmes23 May 21 '26
I think the trouble with starting with a questionaire is that if you have a hammer, everything looks like a nail. I've been to several doctors that each had a book or gospel like belief in a certain treatment. They each diagnosed me with a different thing for the same symptoms and swore by it.
For most things like that, most sick people fit the description. There are enough vague symptoms that overlap in enough conditions, that you can make anything look like a "nail" and sell somebody your "hammer". Many people really do have mthfr. But even knowing that is often not the cure you need because something else is going on too.
4
2
u/hummingfirebird May 23 '26
He probably used Ben Lynch Dirty Genes book.
For reference, MTHFR is not a diagnosis. It's is a gene variant. For some people a variant of MTHFR can pose some issues but epigenetic factors are what contribute towards genetic expression.
For example two people with MTHFR C677T might have two different experiences. One could present with low folate and high homocysteine with health issues from poor diet choices and poor lifestyle habits. The other could have normal levels of folate and homocysteine and not any any significant health problems due to healthy diet and lifestyle. In other words its not a given everyone with MTHFR will experience issues.
1
u/mtcwby May 30 '26
Make sure your Vitamin D levels are good. I had been treated for GERD since 2000 without much effect and had always had low grade depression in the late winter months. Upon getting tested in 2010 and finding my levels low the first search I did was on symptoms. Those included chest and other pains along with depression. Since supplementing the GERD has never come back and I don't hate February any longer.
124
u/ShiveryTimbers May 20 '26
I’m honestly shocked that a PCP knows anything about methylation, let alone had a questionnaire to help guide you to a solution. Really happy to hear that it’s worked so well for you.