i know you are not all doctors, but to be honest here in the UK the doctors don't have a clue what im talking about, so hoping someone on here does and i has an opinion.
all my symptoms started when i was given Septrin which wiped out all my folic acid and caused a long un-diagnosed deficiency, followed by B12 def all of which causing permanent nervous system damage and now diagnosed with GAD.
reason for post, during a massive fight to get b12 injections i saw a private doctor who gave me a a genetic test for MTHFR
The results stated the presence of half 677 (-/+) and 1298 (-/+) and came with the following information.
5,10-methylenetetrahydrofolate reductase (MTHFR) is a key enzyme in folate metabolism, facilitating the
formation of methyltetrahydrofolate, a required cofactor in the remethylation of homocysteine (Hcy) to methionine.
Health Implications
· Heterozygosity for both 677 (-/+) and 1298 (-/+) results in 50-60% reduction in MTHFR enzyme activity
· Increased risk of elevated homocysteine, esp. if low B vitamins
· Possible methylation impairment, including disrupted neurotransmitter metabolism and synthesis of DNA,
hypertension, venous thrombosis, diabetic retinopathy, osteoporosis, and cancers of the stomach
· Low levels of vitamins B2, B6, B12, and/or folate often determines the risk of these associated disorders
Treatment Options
· Ensure adequate intake of folate-rich green vegetables
· Consider supplementation with folic acid (or folinic acid or 5-methyltetrahydrofolate), vitamins B2, B3, B6
(pyridoxal 5-phosphate), B12 (or methylcobalamin), and betaine (trimethylglycine)
· Possible increased risk of toxicity with anthracycline chemotherapy
The doctor at the time told me to take methylfolate which i tried but went bright red and nervous, i didn't try it again and have avoided any methyl . Taking folic acid from the doctor 5mg makes my anxiety worse after a few days of taking it.
Ive had terrible spots on my back etc from the b12 injections so been trying to make the injections less frequent and that kicks off anxiety and memory loss, so the cycle starts again....
I recently tried the biocare liquid methyl b complex which i put under my tongue and i get an instant boost from it (felt a bit weird for a few days). but the methylated form is what i think i need. however this dose is low in 5-mthf and have ordered more specific drops.
The spots seem to have died down too.
so i am thinking about not having the injections and dealing with the folate and b12 by methylated forms.
does anyone else have similar experience in this?
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br74649
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There is no scientific evidence that the A1298>C mutation has any measurable effects on anything. Some studies have shown a tenuous link with many varied conditions, but none have proved repeatable.
The C677>T mutation has been shown to affect the activity of the MTHFR enzyme by making the enzyme less stable. A single copy of the mutation reduces the activity to about 70% of normal. This has no measurable effect in the body, because you just make more of the enzyme.
People with two copies of the mutation (homozygous, like me) have their MTHFR activity reduced to about 30% of normal. For many this is no problem but a few may find that supplementing with methylfolate will give better results that folic acid.
Taking 5000 ug of folic acid a day is a bad idea unless you have a serious, measured, deficiency. Too high levels of folic acid have been linked to some nasty outcomes.
As you say, methylfolate is important for the conversion of homocysteine to methionine. If you do have a problem with MTHFR then your levels of homocysteine will be very high. As for a blood test.
Taking methylcobalamin won't help if MTHFR is the problem. Yes, it will fix the methionine production problem, methylfolate is involved in many other important reactions - and the methylcobalamin can't help with them.
I was told that i am "Compound Heterozygous" which is when you have one mutant allele on both the 677 and 1298 base positions.
And from what i have read, this is considered one of the worst types?
Seems like you are well ahead of me with regards treating it.
After a month on liquid methyl complex i'm feeling a lot better, do you recommend how much methyl folate you need if the mthfr is involved in my symptoms? the current complex has 50% Rda so i think its not enough.
No compound heterozygous means you have one good copy at each of those two locations in the gene. There is a lot of guff on the interwebs from some people who make a pile of cash from pushing 'cures' for methylation problems. But zero published, repeatable, studies.
About 50% of all people are heterozygous at one of those locations. Another 50% are heterozygous at the other location. That means that about 25% of everybody is compound heterozygous. That makes a nice big potential market for scare-stories and snake-oil.
There is plenty of published, repeatable, research that shows harmful effects for homozygous C677>T. It's definitely worse than being compound heterozygous (but it's only 9%, so no $$$$). In the past I recommended people with these mutations to try methylfolate supplements (only 400 to 800 ug a day) - just in case.
But a few months ago somebody (and I've lost the link) posted a lot of papers linking it to other problems. Admittedly, most were small-scale, one-off, studies. But the cumulative effect was to make me more likely to recommend methylfolate.
There shouldn't be any reason why you should find methylfolate better than folic acid, but there's no reason not to try it if you like (apart from the extra cost).
yes you don't want to know how much i have spent privately trying to figure out why these things were happening to me and get prescribed injections in the UK.
I will try the methyl folate at the 400ug and see how i get on, if it helps even as a placebo then its worth it lol.
I know there might not be scientific studies supporting the theories, but is there any published conclusive evidence to the contrary?
Unfortunately, studies with negative findings tend not to get published. It's hard enough trying to keep up with the papers reporting positive results.
The best evidence against any conclusive findings on compound heterogenous is the fact that it is so common. If it really was that nasty then any small study would be able to find a link between those carriers and the nastiness.
But, despite loads of studies, no repeatable findings exist.
I saw somewhere that it is not recommended to supplement with methylfolate if suspicion of tumors exists because it can cause them to grow. Do you know anything about this?
I seem to recall reading that high levels of folate (not just methylfolate) were associated with some cancers. But I'm not sure if they thought the folate caused the cancer or the cancer caused high levels of folate or if they didn't know.
But there should be no need to take stupidly high levels of methylfolate. 400 to 800 ug a day shouldn't be more than some people consume in their diet.
Hi, I had a mthfr test done a couple of years ago and mthfr was ok so methyl conversion was fine however it did show my mtr recycling system was faulty which causes high homocysteine and I had b12 injections. After a year I felt as bad as before and injections gave me no relief............fast forward to this year and several hospital test by endo and sleep test all proven negative.......I learned more about the homocysteine from a television program and started on a regime of high b2, b6, b9 and 1000 b12 sublingual which was the recipe given to lower homocysteine.......after 5 days I felt great and have done now for 3 weeks...the endo I have been working with has been great, says he knows nothing about homocysteine but is phoning me every couple of weeks to follow progress and learn
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MTHFR C677T diagnosis Query!
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