In August I went went to a neurologist who tested my b12 levels because of neurological symptoms. I requested the test because in 2012 when I was trying to get pregnant a naturopathic dr found that my b12 levels were 350... at the time I had no symptoms.
I remember her talking about intrinsic factor antibodies. At the time I did not no much about that either but have since become an expert. I am almost positive she said I tested positive. She gave me sublingual b12/folate and I went on my way.
She also tested me for variants in the MtHFR gene and I tested positive for one copy of C677T and one copy of A1298C. She told me this means that I would have trouble absorbing folate/folic acid.
I just went through all my old blood work going back to 2011... there was no intrinsic factor antibody found. I found the mthfr test. I cannot reach the naturopathic dr until Monday to ask why I thought she gave the test. But I was just tested last week ( again or for the first time) and the results were negative for both intrinsic factor antibodies and parietal cell antibody.
My question is are there two intrinsic factor tests. I thought I read there is an intrinsic factor binding test. I did not have this
I am now trying to figure out why my b12 levels were low. 230
I thought I tested positive for the antibody... but apparently not. I have Hashimoto and wondering if that on its own could cause b12 deficiency ? Could it have to do with the variant on the MTHFR gene?
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CW12
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Is there such thing as a false negative on an intrinsic factor antibody test .... I am assuming no as I could not find any information stating that as possible
There is just the one IF antibody test. It is a competitive binding immunoassay test. So there is just one, you've just had somebody use a more complete description of the test.
The test can give false negatives in people who do have PA, and false positives in people who have very high levels of B12 in their blood.
Your MTHFR mutations will have no bearing on your health whatsoever. At least 25% of the population have those two mutations and there is no reliable evidence that the combination has any greater effect that a single C677T mutation (which has no discernible effect).
The only MTHFR mutation shown to possibly have an effect (and that only in pregnant women) is homozygous (two copies) of C677T.
No MTHFR mutation can cause trouble absorbing folate. The gene codes for an enzyme that converts other forms of folate into methylfolate. If you want to bypass any possible MTHFR problems then you just need to take methylfolate supplements instead of folic acid.
Another question. My folate levels were high B6 too before I was supplementing. Not sure why... at the time I was first diagnosed with low b12. Could that have to do with methylation ? Folate was >20.
I know b12, folate and iron work together. I was taking sublingual b12/folate (1,000). For a while before reading about the dangers of high folate/folic acid supplements. I stopped taking thinking maybe I should let my b6 and folate levels go down... I am ignorant in this area. I know you said taking 400 vs 1000 folate is better and should be safe. But my question is should I wait for levels to go down or is 400 ok to take now. The b6 was in a multivitamin and I stopped taking that.
Yes, low B12 can cause a situation where you have high levels of folate but paradoxically, the symptoms of a folate deficiency. It's called the Folate Trap and is explained in this document b12science.com/B12Science/D...
Folate is cleared from the the body quite quickly. As long as your B12 levels are high enough to get rid of all the methylfolate that had accumulated then 400 mcg of folate should be fine.
I know of no way that B12 can affect levels of B6 one way or t'other.
I have similar mutations - heterozygous C677T, plus homozygous MTRR A66G. From the research I did I have some mutations which affect methylation of B12 and some which affect the recycling of B12. I did not do well on folic acid and have tried it on a few occasions but each time I felt sick after a few days and brown blotches on my lips started to appear so I stick to methylfolate which is a pain as it’s much more expensive. Of course I also get as much as I can through my diet, although the state of the soil these days doesn’t help much!
I have been much better since giving up grains, that’s been a life changer for me, I followed Dr Osborne’s no grain no pain stuff I found on YouTube, and I discovered my gene info by having a 23andme test - the cheapest one will give you your raw data and you can use things like geneticgenie.org online for free to provide you with a summary of your main mutations. They’re not 100% but unless you have thousands to spend then they are a useful start. As has been said, a lot of this info is not backed up with a lot of evidence however it is also early days and I can spot patterns, so I use what info there is along with experimentation and seeing what the results are, i.e. the scientific method!
Much of it falls into good advice - for example I have mutations which mean I detox chemicals less easily than those who have different mutations. Of course anyone would be better without lots of chemicals however also I’m left handed and although I can write with my right hand and many do, I prefer to stick to writing with my left one
" Here’s what we know about MTHFR. The MTHFR gene contains instructions for making an enzyme that’s important for metabolizing folate (also called folic acid or vitamin B9). MTHFR also helps our cells recycle homocysteine, a chemical in the blood, into methionine, a building block for proteins.[1] We also know that there are two common naturally occurring variants in the MTHFR gene, called C677T and A1298C.
When the MTHFR gene has either of these two variants, the resulting MTHFR enzyme is slightly less active, and this can lead to decreased levels of folate and increased levels of homocysteine in the blood"
So they're not saying that it has no effect, the rest of the article says there's a lot of hype around this gene and people are saying all sorts of things about it, and that's what they disagree with.
No...the statement I am referring to explainins why they have stopped testing for MTHFR.
And the body compensated for the less active enzyme by making more. In this sense they say that MTHFR gene variants do not have a detrimental impact on health., hence the reason for no longer offering this test.
Some do benefit from taking methyfolate instead of folic acid, methylfolate makes some people very ill, and there is one gene variant whereby methyfokate is contraindicated ( though I can’t remember which be and have no time to look). And those few who may benefit from methylfolate should certainly not take. It in the excessively high doses advocated by some on the internet. (Research suggests that excessive supplemention with folate can cause neurological symptoms and potentially irreversible neurological damage.
Reference to hype are correct - much on the internet - and they quite rightly object to that.
As far as I can see the 23andme test still shows the MTHFR data, there's no statement on their site or in the news or other general searching finding anything that says that so if you do happen to find it please post! There's articles from this year saying people are ordering 23andme tests for MTHFR data so presume they still are.
Methylfolate is also water soluble and I've personally only seen articles, mostly medical, about how high doses e.g. 15mg+ daily are used to treat mental health conditions, again if you have any links I'd be interested!
The methylenetetrahydrofolate reductase gene, more commonly known as MTHFR, is the most asked-about gene by 23andMe customers. mthfr-image_blog1x1
Some websites and products have made bold claims that common genetic variants in MTHFR can cause a wide array of health conditions, ranging from blood clots and cancer to autism and migraines. So we decided to dig deeper into the published scientific literature to evaluate the evidence.
Our conclusion?
Despite lots of research – and lots of buzz – the existing scientific data doesn’t support the vast majority of claims that common MTHFR variants impact human health.
The biology
Here’s what we know about MTHFR. The MTHFR gene contains instructions for making an enzyme that’s important for metabolizing folate (also called folic acid or vitamin B9). MTHFR also helps our cells recycle homocysteine, a chemical in the blood, into methionine, a building block for proteins.[1] We also know that there are two common naturally occurring variants in the MTHFR gene, called C677T and A1298C.
When the MTHFR gene has either of these two variants, the resulting MTHFR enzyme is slightly less active, and this can lead to decreased levels of folate and increased levels of homocysteine in the blood.[1]
The hype
Some websites have spread the idea that having one or two copies of an MTHFR variant can lead to dozens of negative health consequences. There are a couple problems with this claim. First, it’s unlikely that variants in a single gene could cause dozens of unrelated health problems. Second, the C677T and A1298C variants are very common: in some ethnicities, more than 50 percent of people have at least one copy of one of these variants. Most disease-causing genetic variants are not this common.* Another claim about MTHFR is that people who carry an MTHFR variant should avoid foods that are fortified with folic acid. However, there’s no evidence that individuals with an MTHFR variant should reduce their folic acid intake.
The scientific evidence
Over the past two decades, scientists have examined associations between the MTHFR C677T and A1298C variants and more than 600 medical conditions.[2] Despite thousands of scientific publications, the evidence linking MTHFR to most of these health conditions is inconclusive or conflicting.
For example, some studies report an increased risk of heart disease for individuals with two copies of the C677T variant,[3] while other studies report no association with heart disease.[4]
The same is true for cancer,[5][6] blood clots,[7][8] and many other well studied health conditions.[1][9][10] There is one exception: women with two copies of the C677T variant appear to have slightly increased risk of having a child with a neural tube defect like spina bifida.[11][12] However, according to the National Institute of Child Health and Human Development, as well as other countries’ nationwide health programs, folic acid supplementation reduces the risk of neural tube defects in all pregnant women, including women with an MTHFR variant.[13]
The takeaway
Based on the existing data, scientists at 23andMe have concluded that people should not interpret their genotypes at the common MTHFR variants as having an effect on their health. In order for a connection between a genetic variant and a health condition to be considered real and clinically meaningful, well-run scientific studies need to show convincing and consistent evidence for that association. As statements from multiple scientific and medical organizations indicate,[14] [15] that is currently not the case for the common MTHFR variants. Our team will continue to monitor research in this area – as we do for a wide variety of genetic research – and evaluate new information as it becomes available.
MTHFR Testing is no longer listed on their website.
High 15mg doses of methylfolate used to treat mental health conditions: I'm afraid you're comparing apples and pairs! Under these circumstances, methylfolate is prescribed by a medical professional to treat a specific medical (mental health) condition, and dose and effect (including potential side effects) are regularly monitored by medical health professionals. This is an entirely different scenario than taking methylfolate as a supplement for dietary deficiency or potential methylation issues (in as far as these may or may not exist for specific individuals).
It's a bit like the difference in taking B12 as an oral supplement or injection for B12 deficiency OR injecting high doses of Hydroxocobalamin (in the form Cynakit) for cyanide poisoning (5mg IV over fifteen minutes, then repeated, if necessary). The former low dose treatment (in comparison) is used to treat B12 deficiency. The latter is prescribed and by medical professionals in high dose IV bolus to bind cyanide molecules to B12 so that it can be excreted from the body (along with the excess B12). Same B12 - used in different doses for entirely different purposes. So...same methylfolate used in different doses for entirely different purposes.
And I'm aware that we're in danger of hijacking CW12's post here...perhaps unintentionally...since this conversation has now strayed some way from her original question (and is also off topic for this forum). Apologies for the digression CW12 .
There is some doubt as to whether or not the latest 23andMe test actually looks at the SNPs (Single Nucleotide Polymorphisms) relating to the MTHFR gene and just doesn't report on the result. Or if they don't actually test those results.
I emailed 23andMe exactly two years ago and asked if they tested for one of the SNPs (RS1801133 - aka C677T) and this was their reply -
"Thank you for contacting the 23andMe Team. Our v5 platform does not include rs1801133, so this information would not be available in the feature."
Which sounds fairly straightforward.
However, various sites say that the data is still there.
If anybody has had a 23andMe test in the last two years it would be interesting if they could download the raw data and upload it to the Promethease analysis tool (promethease.com/). Then tell us what results they have for the RS1801133 SNP on the MTHFR gene.
I've just tried it with my raw data from my Ancestry DNA test and it correctly reported my homozygous C677T mutation. Interestingly, Ancestry test 59 MTHFR SNPs while 23andMe (old chip) only tests 16.
However, the results from this test should not be overinterpreted. Only if you are homozygous for C677T might there be a problem. And that problem is easily averted by swapping from folic acid supplements to methylfolate (at an extra cost of about £40 a year).
I really wouldn't recommend any DNA testing for health reasons.
Nor would I recommend it for the 'heritage' testing, where they tell you where your ancestors came from. You'll get more accurate results by asking your grandparents where they were born.
I've tested with three different companies for genealogical reasons. Because my German ancestors are difficult to find through traditional research.
When I first got diagnosed with PA I got sucked in by the MTHFR and methylation rubbish on the web. When I started looking deeper into it I found that almost all of it was complete balderdash, mainly spread by a certain med-school dropout to make him money.
Yep...genetic testing not something I'm considering.
Funnily enough though, I've just had fifteen tubes of blood taken for genetic screen / clinical research re: lupus. And whilst the results won't be made a available to me, I will be contacted if it throws up anything that would be detrimental to my health (over and above the current 'detriments' 😉).
Also worth noting (for anyone reading) - my understanding is that the genetic testing done on the NHS is more reliable / accurate and extensive than that delivered by commercial companies - and comes with counselling / results interpretation too.
I think the results you get from the commercial companies are pretty accurate. I've had mine done with three companies and every SNP I've looked at where the three companies have tested the same location gives the same result.
But the NHS screening is more likely to cover some of the SNPs that the commercial companies don't examine. And, as you say, you'll get proper interpretation.
It would be interesting to know which genes they look at for lupus. I have 10 mutations associated with an increased risk of lupus and/or other autoimmune diseases.
Ah ha...now that's interesting fbirder...and makes new wonder anew about some of the things you've said in the forum before...in particular, about your idiopathic neuropathies.
I'll send you a 'proper' response about this via PM (though probably not able to do this until tomorrow or Tuesday)
About the gene testing...it'd be interesting to compare an NHS gene test over and against the results from commercial gene tests - read somewhere recently that there were potentially quite large discrepancies in the results produced - don't know if this is 'true' and sorry, can't remember where I read it 😬. If I can find it again I'll forward via PM.
When you say excessive supplimentation can cause neurological problems, how much it too much ? I was put on 15 grams of methylfolate, been taking for about 5 weeks and yesterday was having tingling in my extremities again like before I started my B12 injections. I thought maybe it's my nerves repairing themselves or else maybe I need more B12. But now seeing what you said I wonder if I'm taking too much folate...
15mg methylfolate sounds like a high dose - but it depends who put you on it and why. If it's simply for a folate deficiency, then yes - probably too much. But if it's for other reasons (and underlying medical condition or medications that interfere with folate - then maybe not.
Suggest you discuss this with whoever put you on it (presumably a suitably qualified medical professional)...and perhaps a good idea to have folate levels tested too (if results are above the upper limit as defined by the reference range, then that's too much - unless of course there’s a specific medical need (as opposed to a dietary or absorption related deficiency).
As this is a returning symptom and if the only thing that's changed is the introduction of methylfolate, think that's the first place I'd look for a potential answer. If your symptoms are due to excessive methylfolate supplementation, stopping taking it will resolve the problem - if not, then further investigation may be required (iron deficiency anaemia could be one common cause).
But again, please don't stop the methylfolate if it's prescribed for another medical condition without discussion with a suitably qualified medical practitioner.
Also springs to mind (because I think we've spoken about this before) - if you're taking a B complex, check how much B6 it contains. Some contain above 300% of the RDA and even 100% can be too much if the body doesn’t need it. Excessive B6 (pyridoxine) can also cause neurological symptoms...and it doesn't need much 'extra' because it's finely balanced in the body.
Thank you so much for this useful information! I was put on it just for folate defeciency, not for any other special reason. Have my next Dr appointment this week, will definitely discuss all this with him. Thanks again
Just checked my multi vitamin level of B6, it's 2941% of the RDA , lol, quite a lot! It's a whole food b complex, but still...Guess I can stop that to see what happens!
Crikey...that is a lot!!! The highest I've seen yet. Horrified. Especially if was given for a folate deficiency and you don't have an issue with B6 (though you might now - sky high levels I'd think - and certainly one potential cause of your 'new' neurological symptoms.
Indeed, the usual dose of folic acid for a folate deficiency is 5mg daily - so 15mg of methylfolate is three times as much (and methylfolate has a more powerful effect - for want of a better way of putting it).
Might be worth knowing that once a folate deficiency has been addressed (checked via blood test) then a maintenance dose is usually 400mcg a day - if needed to maintain levels (some don't need it but if absorption issues present then it's likely that you may).
Think you may have found the 'answer' to your new symptoms - be interesting to hear what your GP has to say...and think they should (at least) test your folate and B6 level’s).
Yikes! 😬Soo glad I chatted with you about this! Yep, it says 50mg of b6 being 2941 %RDA, well, going to stop that immediately! Ugh, I did take all my suppliments into my new Dr to show him, but didn't look last the percentages. I'm add it to my growing list for this week, haha. Thank you!!! I'll keep you posted. Going to ask to get folate checked for sure! Cheers friend!
What were your neurological symptoms? Your B12 level at 230 is within normal lab limits but it's in the grey area where you may be effectively B12 deficient and, depending on what the neurological symptoms are, you should be treated with a B12 regime even if the blood film and haemaglobin are normal. Look at NICE recommendations re vitamin B12 and Folic Acid deficiency.
Hi CW12 - just a quick thought - restless legs can sometimes be associated with iron deficiency anaemia - have you had blood tests for ferritin levels and a full iron panel done (full iron panel give true iron status). Worth considering, if not (though not the only potential cause of restless legs 🤔).
(Sorry, don't have the time right now to look at your other posts/replies to check, so excuse if this has been covered before).
230 is low. Mine was 275 & I had multiple symptoms of b12 deficiency with many neurological signs/symptoms. Only improved with daily b12 jabs still some residual very mild tremors, continue to improve nearly 18months on. . I think the b12 blood test range is woefully inaccurate -when B12 is low it is not reliable & the only way you will find out is to have B12 injections to see if you improve. I found subcut is just as effective for me.
get those B12 readings to 400 or better--I had 211 reading for I don't know how long and that was 6 years ago and weekly shots for over a year--now have nerve and muscle damage to my legs--I'm still about half as bad as I was when they found it.
Gingerbear644 we dont all fit a one treatment pattern.....& they are guidelines! My GP & neurologist (both nhs) are fully aware & back me fully. As you say "until no further improvement" & as I am still improving & reducing the frequency worsens my neurological symptoms so I will continue with my doctors blessing. Doctors & all my family/ friends have seen the tremendous improvement that daily b12 jabs has given & continue to do so. Please dont be misled I did start of with the guidelines alternate days until no further improvement but in my case there was a drop back on the day I didnt inject, only daily jabs showed a steady upward progression of improvement.
Am afraid treatment isnt always a straight forward process of a jab per 2 or 3 months after two weeks of loading. There are many of us out there who need b12 jabs far more frequently than stated in the guidelines. Its more about the b12 treatment that works optimally for the individual. As we excrete out what we dont need there is no harm in more frequent jabs. Thanks.
You mentioned you have Hashimoto's? Is your hypothyroidism being adequately treated? How do you feel? I have Hashimoto's, too, and was also diagnosed with peripheral neuropathy 3 years ago. Also had generalized weakness and suppressed HPA axis. I have greatly improved with T3 only medication the past year, no more peripheral neuropathy symptoms. Not sure the mechanism, but I suspect soft tissue swelling due to hypothyroidism. Also possible nutritional deficiencies from poor nutrient absorption. Oh, and a functional medicine doctor ordered a heavy metal screen (urine test) which showed I had rather high levels of lead and mercury. He had me do a chelation regimen, so maybe that contributed to improvement, too. Best wishes in your journey!
I really appreciate your response Gingerbear but the bit I dont get is when you wrote "18 months is too long" when you are aware that there isnt a fixed frequency/time period of b12 necessary to get optimal treatment........most people are struggling to get the docs to recognise they need more frequent injections to avoid damage, not less. I personally will only trial reducing my injections if my symptoms all resolve (of which am not convinced they will but you never do know).
By the way its great to come across someone else on daily jabs! 😊
CW12 - you should get Dr. Izabella Wentz' book: HASHIMOTO'S PROTOCOL and Hashimoto’s Thyroiditis: Lifestyle Interventions for Finding and Treating the Root Cause. thyroidpharmacist.com/ She had her 1st child last April at 37 years old. Don't get pregnant if you have Hashimoto's thyroid, your child can have (DOWN SYNDROME). Get rid of Hashimoto's, then get pregnant. Make sure you are taking all the right supplements especially SELENIUM. Eat grass-fed beef liver for all the B vitamins. Should take about 3 months to get rid of the Hashimoto's thyroid.
I use the standard B12 vials available on the nhs -they hydroxocobalim 1mg/1ml.
You have made a really fast recovery. I could walk just about & had severe tremors plus a lot of other symptoms such as double vision too numerous to list. I am much better can walk but still tire, have lost a lot of muscle that Im slowly rebuilding with a physio. My neuro symptoms had gone on untreated for a long time -several years as technically my b12 was in range....lol.
In 2014 my B12 was found to be low, just below the cutoff my HMO uses. I did test positive on the IF antibody test. Thought that was the answer to everything but it wasn't. Continued to get sicker over the next three years, even though I was regularly injecting B12.
My health had gone sideways after those several years. Couldn't get answers, even after visits to Mayo and Stanford. A Facebook friend of mine had a relative whose health had mysteriously declined. I learned she had been found to have chronic Lyme disease. After some quick internet research I knew that's what it had to be in my case too. I also learned you're pretty much on your own here (I'm in the US) for finding a Lyme literate doctor (LLMD) and getting treatment. I was pretty darn sick at that point, so bad I could barely stand without passing out and my feet hurt terribly bad when I did walk to climb the stairs in my home. I eventually found an LLMD and she ran IGeneX tests (was positive for Lyme initially; over the past couple years have been positive for four other co-infections). I've been treating it 2-1/2+ years now and am feeling much better though the soles of my feet are still tender and sore.
Please consider Lyme disease as a possible underlying cause for your low B12.
I noticed you've been to see a neurologist. Lyme caused all sorts of neurological symptoms in me. Saw several neurologists over the course of a couple of years. All they could do was prescribe neuro meds like gabapentin and Lyrica, then later on midodrine for my low BP and faintness. To their credit, they did test me for Lyme (both times negative) but I later learned the ELISA test they and other doctors commonly use often gives false negatives. Due to the politics of this disease, it is getting pushed under the rug and many people are suffering and go untreated for years. Infectious diseases doctors, the CDC and insurance companies are complicit in this medical disaster.
Watch the documentary Under Our Skin, which follows several patients and discusses the politics behind it. Should be available by streaming on Netflix, Amazon, etc.
Just because the test parameters say it isn't Lyme doesn't mean you don't have it. Lyme is notoriously difficult to test for. Most good LLMDs consider having only a few of the bands enough to start treating. You'll have to go outside the traditional medical system. If there is lots of Lyme where you live, you likely know someone who has it and there are probably some LLMDs in your area.
I was so confused when I got the test results . It said negative but I had no idea what the 3 reactive bands meant. I also heart that autoimmune disease can cause them to react ... and I have Hashimotos
1. Hashimoto itself does not cause B12 deficiency, but increases the risk of pernicious anaemia - both are auto-immune diseases, and having one increases the risk of having others. In one study those with PA had 50% risk of autoimmune thyroid disease, whereas those with autoimmune thyroid disease had c. 25% risk of PA.
2. Antibodies against Intrinsic Factor [IF] are only positive in c. 50% of people with Pernicious Anaemia. Others have PA because they make antibodies against parietal cells - but doctors don't test for that because 10% of people without PA also have these antibodies. If you have IF antibodies, it means you have PA [if B12 also low], if B12 low but no IF antibodies, you could still have PA - or another cause of B12 deficiency.
3. B12 level of 230 is OK for some, but deficient in others. If you have symptoms [e.g. fatigue, pins and needles, 'mental fog' and a lot of others, and you have another autoimmune disease, you likely have PA.
4. MTHFR - having one copy of the mutation is no problem. Having two copies may give some problems. Research on this is ongoing. The MTHFR mutation does not cause low B12. It just slows the function of B12 down (because it slows down conversion of folate which B12 needs .. complicated story)
5. Intrinsic Factor binding test - that's the old Schilling test. They don't do that any more.
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High B12 - more tests needed?
More advice needed.
PA tests negative... how accurate are they?
Advice Needed Please
Tests while on injections
