The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
Discuss the article on the Forums.

MTHFR test and insurance coverage - what is your experience?

Discussion in 'General ME/CFS Discussion' started by lazzlazz, Apr 22, 2015.

  1. lazzlazz

    lazzlazz

    Messages:
    46
    Likes:
    56
    Seattle
    Edit to add: although this thread went off on a big tangent initially, I'd still really like to hear from people about the information I originally requested. To clarify:- the MTHFR lab test has already been done. I appreciate some of the suggestions others have made about using other labs. I hope this thread will help others who may decide to use labs other than Quest Diagnostics which bill less for the MTHFR test. Additionally, verify your insurance coverage before having this particular test if you're hoping it will get covered (of course, insurance companies make this more difficult than it should be and it's particularly problematic if you've traveled hundreds to 1000 miles or more to see one of the few CFS experts and would like to get all the blood draws done at that office. From what I've learned, I'd suggest holding off on the MTHFR test until you can verify insurance coverage - Quest Diagnostics does have blood draw locations all over the US and your physician can write an order for it to be drawn at any of those locations).

    I'd also particularly would be interested in information about the dollar amount the insurance company "allowed" and the diagnosis codes that were used when the insurance company approved coverage. (end of edit)
    ======
    I'd like to find out what people's experiences here have been with getting health insurance to cover the MTHFR test (CPT code 81291). My physician ordered one and my insurance company denied coverage for it, saying it was "experimental/investigational". Since then, I've discovered that many people's insurance companies have covered the test, so I'm suspicious about how my insurance company denied coverage. (I've been billed $400 by Quest Diagnostics for the test; for all my other lab tests, the amount "allowed" by my insurance company is a fraction (1/8, on average, across several dozen different lab tests) of what the initially billed amount was. If the insurance company successfully continues to deny coverage, I am stuck paying the excessive amount Quest Diagnostics initially bills.)

    If you have had the test and submitted it to insurance for coverage, please tell me whether your insurance company covered the test or denied coverage. I'd especially like to hear from anyone who successfully appealed denial of coverage (especially the details). I plan to appeal this, but am unsure how to go about it. I'm far from being an expert in genetics testing. Although I could probably spend many dozens of hours learning about this to try and argue my case in the appeal, I'm not sure it's worth it. But if anyone can give me pointers, that would help. I've never appealed an insurance company's decision before, so I'm not sure what the best strategy is. I know I first go through an "internal" (within insurance company) appeal, and then have the right to ask for an "external" appeal. I did ask the insurance company to send me the "criteria" for their decision. all I got was a very general, 10 page document that sets out all the criteria for "allowable" genetics testing, but does not tell me specifically what factors were used to deny coverage in my case.

    Additionally, from reading online, it seems that for this test, with some insurance companies, it may very critical what "codes" (diagnostic, I think) were submitted, but I don't have a clear understanding of this (and it may be insurance-company specific).

    I'd appreciate any advice regarding submitting appeals, either general advice, or specific to this case, especially from anyone (physicians, or employed by insurance companies, etc.) who have a strong understanding. (I hope that others will be helped by this thread as well.)
     
    Last edited: Apr 25, 2015
  2. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,250
    Likes:
    32,008
    @lazzlazz I suspect you may have a hard time convincing an insurance company that this comes under necessary clinical care. In the context of ME as far as I know there is no good reason to think that the MTHFR test is helpful. Maybe your doctor can justify his reason for ordering it?
     
    Valentijn likes this.
  3. lazzlazz

    lazzlazz

    Messages:
    46
    Likes:
    56
    Seattle
    Thank you for your reply. I thought in part the test was to assess issues related to methylation (and subsequent issues related to the body's processing of folate and B-12). There may have been other reasons (I think it's reasonable to say that most patients couldn't adequately enumerate to an insurance company the justifications for most lab tests; I am trying to get information and understand the relevant information). It could be related to some co-morbid condition, or the combination of CFS plus the co-morbid condition. The physician who ordered the test is recognized as someone with a good deal of expertise in the area of CFS (and works closely with other experts in the field). It's possible that there isn't the level of evidence supporting this test that my insurance company demands (given the miserable levels of federal funding available - about 2% on a per patient basis of that spent on MS and lupus), but then, they need to justify why they are demanding a higher level of evidence than other insurance companies demand.

    From what I've read online, it seems that some insurance companies cover the test and others deny coverage and in some cases, they'll cover it with some diagnosis codes and not others (so in some cases, failing to provide a certain code results in denial of coverage, even when the test was appropriate for the patient).
     
    Last edited: Apr 23, 2015
  4. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,250
    Likes:
    32,008
    I think the problem is that there really isn't any published evidence about the relevance of methylation or MTHFR genes to ME - not that the level of evidence is too low. I think the research on linkage has been done and not shown very much. If your doctor is a CFS expert and works closely with others maybe they should be providing the published evidence if they are suggesting patients incur costs?
     
  5. lazzlazz

    lazzlazz

    Messages:
    46
    Likes:
    56
    Seattle
    I haven't been able to find research that has been done on the linkage of MTHFR genes to ME specifically. I understood the link may be in that with certain alleles, the immune system functions less well, which due to downstream effects, may lead to a higher likelihood of certain viruses reactivating (viruses that hang out dormant in the body and are kept in check by a well-functioning immune system) ... some of those viruses are implicated in CFS.
     
  6. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,250
    Likes:
    32,008
    I don't think there would be any evidence linking an allele to an immune malfunction, since it is hard enough to get any replicable evidence on immune malfunction in ME in the first place. I think those ideas are just speculations that people have. People have looked at MTHFR alleles in ME and I have heard presentations about this indicating not much was found. It may be that there are no publications because the results were negative.
     
    Valentijn likes this.
  7. lazzlazz

    lazzlazz

    Messages:
    46
    Likes:
    56
    Seattle
    Thank you for the feedback.
    There has been so little funding ($5 million a year, or on a per patient basis, about 2% of what is spent on lupus or MS; this has been true for more than a decade, and in fact, funding (relative to NIH funding in general and funding for most other diseases) for CFS has decreased in the last 3 decades) for CFS that of course the evidence that exists for any treatment, or to help elucidate what can cause/contribute to development of CFS is inadequate.

    Any doctor who takes CFS patients is pretty much forced to treat based on speculation. Montoya did that when he started treating some patients with valganciclovir. There is now one RCT showing some degree of improvement for some patients with valganciclovir (and one other study which was not an RCT) from his lab, but that's only one RCT - paltry by the standards of research on treatments for most other non-rare diseases (CFS, with a prevalence of 1% or more, is not a rare disease). Others acted on educated speculation (a hypothesis) when they started using other antivirals or Rituximab.

    I guess it's easy to say that someone is speculating if they're using a treatment for which there is little or poor or no evidence, but then if we don't, we're all left with nothing but trying to pace ourselves (but there is really no adequate evidence showing the effectiveness of pacing - it's basically anecdotal at this point).

    I agree. There needs to be a lot more research. Perhaps the federal government will follow the suggestions of the IOM and fund CFS research at least to the point it funds many other diseases. Perhaps the IOM report will have some impact on attitudes and funding for CFS research in from European and other developed countries as well. But most of us are unlikely to opt to wait another 10 years before trying to get some improvement in our status.

    In the meantime, I'm curious about finding out whether others got insurance coverage for the MTHFR test and finding out details about that - what their diagnosis was and so on. From what I have gathered so far, some insurance companies have covered it for some with CFS.

    I'm not convinced that my insurance company has made an appropriate decision in denying coverage. Insurance companies deny coverage all the time; those denials are often overturned by external review. Even after external review overturns that decision, the insurance company will turn around and deny it again for a patient with the same diagnosis. This disingenousness on the part of insurance companies is so bad that some states (CA included) have created a state registry keeping track of the denials which are overturned, to prevent insurance companies from continuing to deny coverage for other patients. Unfortunately, I'm not in a state where currently there is such a system, but I'm hopeful that will change. There actually are different standards for evidence for diseases for which little research has been done - I've read those criteria (provided by my insurance company). It's a really gray area - where do you draw the line? That's the question. And also, how do some insurance companies justify drawing the line in one place, and others draw it in another place.
     
    Last edited: Apr 24, 2015
  8. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,250
    Likes:
    32,008
    I actually disagree with the bit in bold. I have been in this situation myself - developing a new treatment. At every stage I published my findings as trials - 5 patients, then 22 patients, the a full blown controlled trial of 120 patients and so on. No patient was treated who was not part of published research. At least to begin with I covered all the costs myself. The Norwegians have done exactly the same for rituximab in ME. They have published every stage - or at least made the data available to scientific colleagues at meetings until they can be published. For methylation-related treatments there is nothing published as far as I know. And what has been presented about gene variants seems to be that there is no major difference in ME.

    I agree that more funding is needed for research but doctors treating patients with new therapies have, to my mind, a responsibility to document that treatment as published research so that it can be made use of by others. If that is not done then government bodies have no reason to fund larger studies. We cannot expect government funding bodies to take an interest if the clinicians are not providing adequate justification for taking research further.
     
    Eeyore, PennyIA and Valentijn like this.
  9. lazzlazz

    lazzlazz

    Messages:
    46
    Likes:
    56
    Seattle
    In principle, what you say sounds great. In practice, not really do-able. There are plenty of physicians treating patients with CFS and doing their utmost best, who are up-to-date on what literature there is, and who are not trained in conducting research (and some who are involved in conducting research are not well trained in conducting research). In the meantime, many people are in insurance plans which require them to use in-network physicians, or HMOs. Those physicians are for the most part, not in a position to be conducting research, so unless patients pay out of pocket (which is very expensive for most, since physicians' fees are disproportionally high, given the incomes of most Americans), they don't have access to a physician who is trying to do what you claim to be doing.

    If, at this point in time, physicians only use treatments/tests for CFS for which there is high quality (which requires being replicated, along with many other things) research showing good efficacy, we'd be left for the most part with physicians who say they don't treat CFS. That actually is very much the case (although ignorance and bias on physicians' part is more likely the explanation for this state of affairs), which is why some patients have travelled hundreds (or a thousand miles or more) to see someone with recognized expertise in CFS. There aren't any treatments right now for CFS which meet this standard.

    I also don't want the majority of physicians to start publishing small, uncontrolled studies. It would lead to a lot of garbage in the scientific literature, which ends up wasting time when others have to wade through it. Good small scale studies might lead to well-designed RCTs, but the vast majority of physicians are not competent to design such small scale studies - they're simply NOT trained in conducting research - and it takes years of training to really have strong expertise. (The peer review process also involves the time of experts ... and their time is extremely valuable as well. Journals receiving a barrage of poorly designed small-scale studies from poorly trained physicians is just not going to lead to improvements. Many physicians (amongst those who make an effort to keep up with the literature; many don't) don't even seem to have the ability to digest the good research that's published and to deal with uncertainty when the literature is unclear or contradictory. It would be better for most physicians to work on developing that ability. ) I'm fine with those who are well trained in research doing this. It takes a good deal of training in research to really design a study well. Even physicians who have gone on to do fellowships where they were involved in some research are rarely well trained in conducting research unless they received additional training and stayed involved in research.

    I'm not arguing for physicians doing ridiculous things, and far too many physicians do just that in many fields (including failing to adequately inform themselves about things that should be fairly cut and dried based on the research literature and available published guidelines - although even guidelines can be wrong and reflect biases (so relevant research evidence is ignored or underemphasized). Many physicians don't even understand that a "reference range" for a lab test is not the same as a "normal range" for an individual (this occurs all they time with TSH tests). Many physicians say things like "I don't believe CFS is a "real" disease" or "it's psychological" (ignoring, of course, that so-called "psychological" illnesses all have a physiological basis (thus, saying "it's psychological explains nothing, but rather reflects being dismissive of the patient), regardless of whether we understand that basis, and ignorant of the fact that many diseases now recognized were dismissed as "psychological" in the past). I find it amazing that such physicians are making hundreds of thousands of dollars annually in salary - and that patients are expected to put up with this nonsense.

    But given the paucity of research in CFS, some educated speculation is justified. I think it's more than a little disingenuous to deny that. In fact, you were doing just that when you ran small and not-so-small studies. There isn't a single treatment approach for CFS out there that is based on a strong body of literature. Few studies have been replicated; relatively few well-designed RCTs have been published. The IOM report makes that clear.

    Again I ask, should patients then (given the poor evidence for any CFS treatment) all wait another decade before trying to get better?
    At present, we're stuck with doing our best, based on what suggestions there are in the very small body of published research on CFS, plus related (but usually not directly applicable) evidence from other fields. We're trying to do things like strengthen our immune system, if it seems that may be a contributing factor based on lab tests (even though there's not a good body of research supporting this; certainly little has been replicated; and it certainly doesn't meet "gold standards"). We're reaching for supplements that have been shown to boost the immune system from cancer research ... but there's no research on that supplement for CFS. Are we really supposed to not try to use what is known from other fields and try our best to apply that to getting better? It would be fantastic if a solid body of research existed .... but decades of prejudice against and derision of CFS has resulted in very little funding. Included amongst CFS patients are physicians, are scientists highly trained in research, both within and outside of medical research. They, too, are doing these things, because the lack of high quality evidence (due to the lack of research funding) means that's the best we can do. (Even for a well-funded area like cancer research, it is highly likely that people will look back in 50 years and roll their eyes at the treatments we have now. In all areas of medicine, all one can do is do one's best using the currently available evidence and knowledge, including drawing on other fields and less direct knowledge/evidence)

    We're using anecdotal evidence and talking to each other on boards like PR. Some find IV saline improves things for them - but there's no body of evidence supporting that being effective for CFS. Should physicians not suggest a patient try that until there is published evidence? There isn't published evidence supporting the anecdotal evidence that patients need to learn to pace themselves - yet even the IOM report talks about this (in fact, there is plenty discussed in the IOM report that is based only on very sketchy evidence, by the standards of evidence for diseases with strong research funding. This isn't because the IOM report is bad - but rather, the lack of evidence is due to the lack of research funding). Should physicians refrain from discussions about this (after all, those discussions take time, and time is money ... money paid by the patient). I could go on and on. (Additionally, there are plenty of treatments and procedures all over medicine (and not just in the CFS realm) for which there is little evidence base. For a few of such wide-spread practices, studies have more recently been done (after the practices were carried out for a decade or much longer) and some of those studies have shown that even though physicians/surgeons were extremely confident the treatment/procedure was more effective than another, they were wrong).

    I think your position is more idealistic than practical. It's aspirational, but not practical, given the paucity of research in CFS and paucity of research dollars. I also wonder if every aspect of your own practice would really hold up to your standard if scrutinized carefully.
     
    Last edited: Apr 25, 2015
    SOC likes this.
  10. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,250
    Likes:
    32,008
    Dear @lazzlazz,
    I am making this point precisely because I want to focus on the practical. I have been in the same situation myself and I got the treatment licensed. Doing good trials does not actually require any training. It requires intelligence and honesty and basic medical education. Nobody trained me in trials. I worked out how to proceed based on the particular problem I had to tackle and a knowledge of school statistics and what I gathered from attending medical rounds.

    There is no point calling on government bodies to provide funds unless there is some credible initial evidence to follow. All that requires is careful documentation and submission to professional meetings like ACR or EULAR or a neurological society. Small trials are fine as long as they are designed in a way that produces some credible clue that can be followed up. They are a lot better than huge trials with design flaws.

    To my mind, if a physician wants to try out a new treatment and establish that it works they need to take the trouble to document as well as they can. If they are not prepared to do that then they should not be handing out unproven treatments that have significant risks associated with them. Even supplements like folic acid look as if they may have significant health risks as well as benefits. Antibiotics have significant problems.

    So to be practical ME patients should be insisting that their physicians publish documentation of the treatments they are trying patients on. Unless that happens no government body is going to invest in research in such treatments. Fluge and Mella published and now they have government funding - which for a commercial drug is actually quite unusual, since governments normally expect companies to fund. I cannot find anything published on methylation in ME that would make me as an advisor to a government body, want to put resources into it. ANd I guess that is reflected in the insurance company position too.
     
    aimossy, deleder2k and Valentijn like this.
  11. adreno

    adreno PR activist

    Messages:
    4,841
    Likes:
    11,029
    @lazzlazz

    Instead of waiting around for a MTHFR test, you could simply assume that you have the mutations. What would be the treatment? Methylfolate. A trial run using a good quality vitamin B complex with 400-800 mcg methylfolate would be all you need to empirically determine whether this is a problem for you. No need for expensive tests.

    Or, if you're genuinely interested in genetics, I would fork out the $99 for a 23andme test.
     
    Last edited: Apr 25, 2015
    Valentijn likes this.
  12. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,834
    A simple homocysteine test can also be a good indication of whether or not you have folate issues. It's also perhaps more relevant, since the common MTHFR mutations won't even cause problems if someone eats a good amount of vegetables. And I guess that's the other thing to do - eat enough veggies, and MTHFR doesn't matter to start with.

    But yeah, I'm not sure why doctors use expensive MTHFR genetic tests, when 23andMe is testing more MTHFR SNPs than many of those tests, which usually only focus on two. If the entire gene or all of its exons were being sequenced, I supposed the cost would be more sensible.
     
    Last edited: Apr 25, 2015
    Eeyore and adreno like this.
  13. PennyIA

    PennyIA Senior Member

    Messages:
    719
    Likes:
    1,663
    Iowa
    My MTHFR test was covered because I've previously had high homocysteine (found when I suffered a pulmonary embolism - kind of the worst case side effect from high homocysteine)... but my 'regular' treatment didn't change because my regular doctor doesn't understand methylation support.

    To be honest, I think there is more to methylation than two genes can tell you. The $99 23andme.com test tells me far more and helped with the specialist that treats methylation disorders. I truly believe that methylation issues aren't at the heart of ME. BUT. I do believe that while I'm waiting for tests on ME and diagnostics and effective treatments... that the methylation treatment did help me manage some of the side effects I was experiencing from ME. Admittedly, it's still very much trial and error. But as I proceed, getting 'any' treatment to help side effects is better than nothing - which is what I would have gotten from the basic MTHFR test and the basic non-treatment from my regular doctors.
     
    Valentijn likes this.
  14. Hip

    Hip Senior Member

    Messages:
    9,754
    Likes:
    15,537
    @lazzlazz
    It is a shame that you did not go for the $99 23andme.com test, which not only determines your MTHFR mutations, but also provides you with the details of nearly a million of your SNPs. That's a cost of about 0.01 cent per SNP!

    However, much of the discussion about SNPs on this forum tends to be a bit pseudoscience-like, and the effort-to-results ratio seems to be pretty low (ie, people spend lots and lots of time focusing on SNPs, and following speculative theories, but rarely does this seem to lead to tangible health improvements).


    Nevertheless, it is interesting to know your SNPs, and sometimes they can provide useful health related info.

    For example, just before developing ME/CFS from a viral infection, I experienced a severe chronic exposure to organophosphate pesticides in my home, but others in the house who had similar exposure did not get as ill as I did. I later found out through 23andme that I possessed a double mutation in the PON1 gene that is responsible for organophosphate detoxification, a mutation which can make you 40 times less able to detoxify organophosphates.
     
    Last edited: Jan 25, 2017
    Valentijn likes this.
  15. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,250
    Likes:
    32,008
    I agree that if a was sick I would love to know my SNPs and I would try to find 99$. But I am not sure I would see it the business of an insurance company to pay!!
     
    Valentijn likes this.
  16. lazzlazz

    lazzlazz

    Messages:
    46
    Likes:
    56
    Seattle
    Reply to Jonathan Edwards:
    I guess I have to wonder whether you understand how screwed up the American insurance system is. I just realized you're not in the US so really doubt you do. I mentioned a bit of that in replies to you above, but don't want to go into it now. There's plenty on the internet if you're curious about how insurers routinely deny coverage, even after such denials were overturned by external review. They also don't apply standards of evidence evenly across the board, for various lab tests, drugs, and procedures. You also probably have no idea of how charges can vary dramatically (lab charges, hospital charges, provider charges, and so on). For the lab tests that were approved, Quest Diagnostics (the lab) initially billed on average EIGHT times the amount that was subsequently approved under the lab's contract (as a preferred provider) with my insurer. Such elevated charges are ridiculous, and hit those least able to pay them the hardest. The lab is making a profit under their contract with my provider - the excess charge is just ridiculously excessive profit. But enough of that. With all due respect, I don't think continuing this discussion with you will get me the information I originally asked for. I commend you for the care you take. Perhaps the UK system makes that more practical.
    ==============================================
    My original request was to hear from people regarding whether their insurance companies covered the MTHFR test, (and what their diagnosis codes were) and to hear from people who have successfully appealed denial of coverage. I still would like to hear from people about this. Unfortunately, this thread went off on a major tangent.

    For those who need to appeal an insurance company's denial of coverage (for any reason), see page at link below. There is a very useful sample letter to borrow from when you make your appeal.
    http://jeffreydachmd.com/2014/12/making-health-insurance-company-pay/
    From the page above: "Of the small number of states tracking such information, denials ranged between 11 percent and 24 percent of claims."

    Thanks to others who applied above; to clarify - the lab test has been done. I hope this thread will help others who may decide to use labs other than Quest Diagnostics which bill less for the MTHFR test.
     
    Last edited: Apr 25, 2015
  17. lazzlazz

    lazzlazz

    Messages:
    46
    Likes:
    56
    Seattle
    This is interesting. Although it's really difficult to clearly link most low-level chemical exposures to health issues, that's really because in the US, the policy is to "assume safe unless otherwise shown" and not require manufacturers to do adequate safety testing.

    I find this interesting because unknowingly, I was exposed to chemicals used to treat termite infestation. I was in grad school and just before moving into a university apartment, the university treated the building for termite infestation. However, I was not told about that. I found out several years later that this had happened. It was within a few years of moving in that I think the CFS signs (very gradual in my case) started showing up. I also developed shingles. Whether that was related to the chemical exposure, I do not know, but if the chemicals can in some way weaken the immune system, it might be related. Another person who moved into the building at the same time developed painful neuropathy within a few years. Honestly, we'll never be able to establish a causal link.

    In the US, we need to be screaming loudly about the the fact that manufacturers are not required to do adequate safety testing for chemicals. Of the tens of thousands of chemicals on the market, there is almost no safety data of any significance. For a few hundred of them, there is very minimal safety data, but even when that safety data clearly shows concerns (e.g., phthalates are a good example), the chemicals aren't removed from the market due to industry lobbying - or are removed very slowly, or are scheduled for (very slow) removal, but then those deadlines are extended (fungicides used for strawberries are one such example - they're particularly dangerous for the people who pick strawberries). Some of these chemicals are banned in the EU (or were never approved for use, due to lack of safety evidence), yet they continue to be used in the US (rBGH/rBST is one such example but there are many). Then there are things like BPA, clearly shown to be of concern, which the manufacturers try to replace with something else (BPS) which is of equal concern (but they can plaster "BPA free" on the packaging - and consumers don't realize BPS is in the product and just as bad).
     
    Last edited: Apr 25, 2015
  18. Hip

    Hip Senior Member

    Messages:
    9,754
    Likes:
    15,537
    A quick check on Google reveals that years ago, organochlorines were often used for termite infestation. These chemicals, which can remain in the body for many years, are mostly banned now, but there were some studies linking them to ME/CFS. See these refs: 1 2 3 4. It's always hard to know, though, what the degree of you exposure was, and whether it might have contributed to the development of ME/CFS.
     
  19. pogoman

    pogoman Senior Member

    Messages:
    188
    Likes:
    173
    From what I've seen on the various pregnancy boards when I first started researching mthfr, diet alone does not help those with mthfr issues.
    Many of them are on blood thinners along with folate, fish oil, B12 etc after multiple miscarriages.

    Dr Ben Lynch doesn't believe homocysteine level alone is a good indicator of mthfr deficiency.
    http://mthfr.net/mthfr-mutations-are-more-than-high-homocysteine/2011/09/20/

    In my case, homocysteine is normal yet I've had all these issues the past few years that my methylation treatment has greatly reduced in scope.

    To the OP, my sister's endocrinologist had her tested for both mthfr variants back in 2012 or so (c677t +/+) and I believe her insurance covered it as she never mentioned the cost.
    I myself did the 23andme test because the Kaiser HMO genetic doctor relied on my homocysteine level test and said no further testing was needed as I did not suffer from mthfr deficiency :bang-head:
     
  20. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,834
    The research disagrees ... there's been at least one sizable study (I think 2) regarding the effects of MTHFR alleles with regards to related birth defects, which also looked at supplement and diet. The increased risk disappeared in both cases.
    It's nice that he believes that, but has he or anyone else published regarding it?
    Those treatments may be helping for reasons other than supporting the methylation cycle.

    Additionally, "MTHFR deficiency" is the norm in the general population. Those SNPs are very common, and for the 31 "control" 23andMe profiles which I have, the average person has an approximate reduction of MTHFR function of about -32%. Which, ironically, is slightly worse than is seen in the 31 ME patients I have full data for. Basically, this averages out to everyone being C677T +/- or A1298C +/+.

    Only 4 people in each group have optimal MTHFR function. If diet didn't do a very good job of correcting for MTHFR deficiencies, these SNPs simply could not have proliferated as they have.
     
    adreno likes this.

See more popular forum discussions.

Share This Page