The 12th Invest in ME Conference, Part 1
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Folic Acid level decreasing even after supplementation. Could be MTHFR?

Discussion in 'Genetic Testing and SNPs' started by trio, Dec 19, 2016.

  1. trio

    trio

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    (If it's in the wrong section, please move it.)

    Hey,

    My test results:

    1st Nov, started supplementing Folic acid, 800 MCG/day

    18th Nov, 2016 -
    VITAMIN B6/P5P [LC-MS/MS] 4.02 ng/ml (5 - 50)
    VITAMIN B9/FOLIC ACID [LC-MS/MS] 0.6 ng/ml (0.2 - 20)
    VITAMIN B-12 [C.L.I.A] 251 pg/ml (211 - 911)

    Started supplementing with Methylcobalmin(B12) and B6.

    2nd Dec, 2016 -
    VITAMIN B6/P5P [LC-MS/MS] 53.06 ng/ml (5 - 50)
    VITAMIN B9/FOLIC ACID [LC-MS/MS] 0.51 ng/ml (0.2 - 20)
    VITAMIN B-12 [C.L.I.A] 668 pg/ml (211 - 911)

    Started supplementing with 1200MCG Folic Acid/day.

    16th Dec, 2016 -
    VITAMIN B6/P5P [LC-MS/MS] 28.78 ng/ml (5 - 50)
    VITAMIN B9/FOLIC ACID [LC-MS/MS] 0.24 ng/ml (0.2 - 20)
    VITAMIN B-12 [C.L.I.A] 793 pg/ml (211 - 911)

    You can see that Folic Acid level has only decreased in every test.

    I am 19 years old, male, 6 feet tall and weigh 139 lbs. Homocystiene levels are normal.

    I take no medicines other than Omega 3, Vitamin D, and a multi vitamin.

    Symptoms:
    Hair Graying since 16
    White spots on face
    Very high Lipo-protein A
    Depression
    Fatigue

    I could have just got a genetic test done but here in my country it's very complicated and very costly.

    What do you suggest? Should I get my MTHFR gene tested?

    Thanks :)
     
  2. adreno

    adreno PR activist

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    Yeah, folic acid is probably a bad idea to supplement. Go for methylfolate instead.
     
  3. trio

    trio

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    Thanks for your reply. I have already ordered Jarrow's Methylfolate.
    Do you think I could have MTHFR mutation? It costs about $800 here to get it tested, that's why I want to make sure before get tested.
     
  4. Hip

    Hip Senior Member

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    If you were taking folic acid 800 mcg daily during all your testing, then the timing of your blood test (how many hours the blood test was performed after taking your folic acid tablet) may have an impact on the folic acid levels measured. I don't know how these tests work, but that was one thought that occurred to me.

    For example, your first test could be high simply because you may have taken the folic acid tablet just a few hours before the test.
     
    trio and actup like this.
  5. alicec

    alicec Senior Member

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    Even if you do it's probably not relevant. That is a ridiculous price - I hope you would be getting a lot more than just testing of the MTHFR gene but even so, whole exome sequencing is available for less than that price.

    There is a lot of nonsense circulating on the internet about MTHFR SNPs. The two that generate the most comment, C677T and A1298C, are actually very common, about 42% of people are +/- for each and about 9% are +/+; all those millions of people do not have health problems as a result of these SNPs.

    Furthermore, the effects on the enzyme are small and healthy people usually compensate just by getting plenty of folate from diet..

    They can be an issue in conditions of increased demand (eg pregnancy, some illnesses) but this can be accommodated by supplementation.

    I agree that folic acid supplementation should be avoided. everyone processes it slowly (it is not found in nature) and a significant number of people process it very slowly. This in turn can create problems with other aspects of the folate cycle.

    Your folate test results do seem odd but in any case, blood tests for folate have limited usefulness. They can reveal frank deficiency but can also be contradictory - eg sometimes high values are measured but these reflect failure of uptake into cells. In other words a functional deficiency can exist in face of high folate levels in the blood.

    A number of people on this forum have found benefit from supplementation with sometimes quite high doses of folate and B12, so experimentation with these vitamins is certainly worth trying. Response or otherwise has little to do with SNPs though, it reflects the more complex reality of the totality of metabolism, to which SNPs might be making a small contribution.
     
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  6. Sea

    Sea Senior Member

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    B12 and B9 are interdependent on each other. Since your B12 was relatively low and you have begun supplementing it, it may be that you are using up more folate than you're supplementing and still needing more. The fact that your levels are dropping probably indicates that you can utilise folic acid as those who cannot process it usually have high levels build up in the blood. Still, methylfolate may be a better choice than folic acid as your body then doesn't have so much work to do converting it.
     
    trio likes this.
  7. alicec

    alicec Senior Member

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    Could the folate results be for RBC folate rather than serum/plasma?
     
  8. trio

    trio

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    Supplements were taken at least 15 hours before each test so I don't think this is the case.

    Chances are that it's serum. I'll ask the lab anyway and will let you know.

    BTW, I have ordered the test. Costed me about 670 USD. Will give blood tomorrow and will get results in a month. I will keep you guys posted.
     
  9. Hip

    Hip Senior Member

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    I am not so sure. My calculation below shows your folic acid supplement taken 15 hours earlier will make your blood test results show an incorrect value of 0.28 ng/ml higher than it should be (but this error will depend on the exact number hours between your last folic acid supplementation and the blood test).


    Here is the calculation, in case you are interested:

    If you waited for 24 hours after your last folic acid supplement before taking the blood test, then by my calculation (not shown here), it would have negligible effects on your results. So I would suggest in future you might want to wait at least 24 hours from your last folic acid supplement before doing the blood test, in order to get accurate results.

    According to this article, the normal blood plasma folate level for adults is 2 to 20 ng/mL (and the normal red blood cell folate level is 140 to 628 ng/mL). Though your lab has given the normal range to be 0.2 to 20 ng/mL.

    I hope that helps.
     
    Last edited: Dec 21, 2016
    Valentijn likes this.
  10. trio

    trio

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    That is possible. I'll have another test soon.

    I am getting depressed, angrier and more irritated day by day. I cannot go to a doctor because they say "It's just your mind".
     
  11. Hip

    Hip Senior Member

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    Is it ME/CFS that you are suffering from?
     
  12. trio

    trio

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    I am not sure. I love working out, there is no pain in my muscles. I do have forgetfulness, I often forget name of things or people but I also topped my school last year. I have low confidence though. I also feel extremely tired and low some days, not everyday though.

    I have improved ALOT after taking the Vit D and Multis.
     
  13. Hip

    Hip Senior Member

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    Low vitamin D status can cause ME/CFS-like symptoms, so that's something you may want to look into. You can get a vitamin D test from you doctor, or you just try taking high doses of vitamin D (for example, 10,000 IU daily) , and seeing if you further improve.

    One of the fairly unique symptoms of ME/CFS is post-exertional malaise (PEM), which is where many of your symptoms worsen after exercise. Do you get any PEM? The PEM may appear soon after exercise, or may appear the next day, or even later (delayed effect).

    The CDC criteria for ME/CFS you may want to look at, and check your symptoms against those criteria.
     
    trio likes this.
  14. trio

    trio

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    Many thanks for your reply. I am already taking 10,000 IU Vitamin D. I was deficient 2 months ago (17 ng/ml), but now my levels are 45 ng/ml (30-100).

    I actually feel very good after working out.

    I read the criteria.

    post-exertion malaise lasting more than 24 hours - No.

    unrefreshing sleep - No.

    significant impairment of short-term memory or concentration - Probably

    muscle pain - Probably

    pain in the joints without swelling or redness - I do have a knee pain, without any swelling or redness but it has only been 2 weeks since it started and it hurts only when I sit in the same position for too long and then try to straighten my legs. NO PAIN IN OTHER JOINTS

    headaches of a new type, pattern, or severity - No

    tender lymph nodes in the neck or armpit - No

    a sore throat that is frequent or recurring - I also have sore throat. It feels like there is something in my throat... like cough... ALWAYS.

    "weight loss" - I easily GAIN weight.

    Lets assume, I do have CFS, it's not treatable so is there anything I can do?

    Again, thanks for taking your time to reply to my questions :)
     
  15. Hip

    Hip Senior Member

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    There are treatments that can help improve ME/CFS symptoms. Many of these are listed in this roadmap document.

    Though at this early stage in seeking a diagnosis, you would probably not want to settle on ME/CFS too quickly, as there are many other conditions that can cause ME/CFS-like symptoms, for example: celiac disease, anemia, hypothyroidism, lupus, etc. It's only when you rule these other conditions out that you can feel more confident in an ME/CFS diagnosis.

    To be really sure of ME/CFS, you would want to satisfy the strict CCC definition of ME/CFS (see page 2), in which PEM is a requirement.
     
  16. trio

    trio

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    Thanks for your reply :)

    I do not have Anemia, Hypothyroidism, or Lupus. Not sure about Celiac.

    I do not have PEM. I feel more energetic after exercise. After reading all the symptoms, I do not think I have CMF (I have chronic cough, but it's negligible, doesn't affect my day to day life at all)... I might have CMF too, I wish I could just go to a doctor but I don't want to be embarrassed again.

    P.s. I have started taking Methylfolate from today, will let you know if I see any improvements.
     
  17. trio

    trio

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    Hey guys, it has been 20 days since I am taking 800 MCG MethylFolate and it has shown 0 improvements.

    I don't know why my Folic acid level is going down.

    16th Dec, 2016 -
    VITAMIN B6/P5P [LC-MS/MS] 28.78 ng/ml (5 - 50)
    VITAMIN B9/FOLIC ACID [LC-MS/MS] 0.24 ng/ml (0.2 - 20)
    VITAMIN B-12 [C.L.I.A] 793 pg/ml (211 - 911)

    15th January, 2016 -
    VITAMIN B6/P5P [LC-MS/MS] 32.07 ng/ml (5 - 50)
    VITAMIN B9/FOLIC ACID [LC-MS/MS] 0.12 ng/ml (0.2 - 20)
    VITAMIN B-12 [C.L.I.A] 547pg/ml (211 - 911)

    I took the supplement at least 18 hours before the test (timing was same in all the previous tests).

    There are NO improvement in my symptoms like hair graying at all.

    I also have slightly elevated RBC Count and Free PSA.
     
  18. trio

    trio

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    Hey guys, I have a good news.

    After trying everything, but no success, I increased my doses from 800 MCG MethylFolate/day to 2400 MCG/Day and it worked.

    Just in two days, the new levels are:
    VITAMIN B6/P5P [LC-MS/MS] 39.66 ng/ml (5 - 50)
    VITAMIN B9/FOLIC ACID [LC-MS/MS] 0.21 ng/ml (0.2 - 20) (Almost doubled)
    VITAMIN B-12 [C.L.I.A] 723pg/ml (211 - 911)

    I feel better. I am not sure why I need more than normal amount though?

    Thanks
     
  19. alicec

    alicec Senior Member

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    Many people on PR take more than you do, sometimes much more, and report benefit. Deplin which has been used for things like depression contains 15 mg.

    Blood tests for things like folate and B12 have limited usefulness - maybe revealing frank deficiency but not much else.

    Why don't you try experimenting with increasing doses of folate and B12, along with various co-nutrients, and see if you continue to benefit?
     
  20. trio

    trio

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    Hey,
    So I now have my genetic report.

    I have mutations in these genes:
    MTHFD1 || c.1958G>A (p.Arg653Gln) || Autosomal Recessive || Heterozygous
    MTRR || c.66A>G (p.Ile22Met) || Autosomal Recessive || Homozygous

    No MTHFR mutation.

    How do those mutations affect?

    I take a multivitamin having 400 MCG Folic Acid and other tablet having 2400MCG of Metafolin.

    Thanks : )
     

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