coco Posted April 16, 2012 Report Share Posted April 16, 2012 How Much Methylfolate Should I Take? Find Out by Dr Ben on March 22, 2012 in MTHFR Mutations When one is diagnosed with a MTHFR mutation, the first thing typically prescribed is methylfolate – or, incorrectly, folic acid in high amounts. There is no standard of care prescribing methylfolate for MTHFR mutations. Thus, the variation in prescriptions is vast – anywhere from nothing done upwards to Deplin 15 mg or Folic Acid 4 mg. There are a few issues here: Doctors are guessing how much methylfolate to give you Doctors are giving high doses of methylfolate Doctors should not prescribe high dose folic acid Diet is commonly not evaluated Supplements are commonly not evaluated Even with all these issues, doctors – and you – can know how much methylfolate you should take. There is a lab test which evaluates blood levels of: unmetabolized folic acid methylfolate If doctors order this lab test, methylfolate dosing will be more accurate. There are a couple potential issues with the lab test. Is methylfolate stable or does it readily break down thus making the lab results inaccurate? Where did the lab get the normal ranges for methylfolate? Since the general population has a 50% to 60% chance of having one MTHFR mutation, the potential for methylfolate ‘normal’ ranges being off exists. These are two questions that need to be asked – and will be followed up here. In the meantime, for those wanting to evaluate their unmetabolized folic acid levels and methylfolate levels, I do recommend ordering the Unmetabolized Folic Acid Test by Metametrix. Who should order this test? Those with MTHFR defects Those who have any signs of MTHFR mutations Where do I send my doctor to order this test for me? You send them to Metametrix. What if my doctor won’t order this test for me? You may order this test directly from Seeking Health. Please note that insurance is not accepted. Stop guessing and identify if your methylfolate levels are where they should be. Be sure to tell your doctor about this test! Don’t Want to Pay for a Lab Test? Rather experiment to see how much Methylfolate you need? If you have been diagnosed with a MTHFR defect, and you want to try taking some methylfolate, what I recommend trying to do is this: Take small amounts of methylfolate along with methylcobalalmin and work up. Consider taking 1/2 tablet of Active B12 with Methylfolate. This amount is typically well-tolerated by many. Increase to a full tablet after 1 week. Continue to increase the amount taken by 1/2 tablet every 7 days until you feel really good. If you feel side effects from taking Active B12 with Methylfolate, take 1/10th tablet of Niacin. Work with your doctor on this and inform them what you are doing. Link to comment Share on other sites More sharing options...
minimaxwell Posted May 23, 2012 Report Share Posted May 23, 2012 Dear Coco, thanks for posting this. And thank you to Nancy d. for leading me to this post. We just found out that my DD is positive for one copy of C677t AND one copy of the A1298C. Her ped told me she was negative last month. today I picked up the lab results and was shocked! Her Glutathione was 678 range is 544-1228 Also high for Copper 198 range 70-155 Zinc was 93 range 70-150 Platelets 393 range 150-349 8 weeks post lvlG and doing well,about 70% improved. 2 recent cases of Pancreatitis which i now think is due to MTHFR. currently taking folic acid as per Dr. K. ,should I discontinue now before testing or is she getting any benefit from it? thanks in Advance, Tiffani How Much Methylfolate Should I Take? Find Out by Dr Ben on March 22, 2012 in MTHFR Mutations When one is diagnosed with a MTHFR mutation, the first thing typically prescribed is methylfolate – or, incorrectly, folic acid in high amounts. There is no standard of care prescribing methylfolate for MTHFR mutations. Thus, the variation in prescriptions is vast – anywhere from nothing done upwards to Deplin 15 mg or Folic Acid 4 mg. There are a few issues here: Doctors are guessing how much methylfolate to give you Doctors are giving high doses of methylfolate Doctors should not prescribe high dose folic acid Diet is commonly not evaluated Supplements are commonly not evaluated Even with all these issues, doctors – and you – can know how much methylfolate you should take. There is a lab test which evaluates blood levels of: unmetabolized folic acid methylfolate If doctors order this lab test, methylfolate dosing will be more accurate. There are a couple potential issues with the lab test. Is methylfolate stable or does it readily break down thus making the lab results inaccurate? Where did the lab get the normal ranges for methylfolate? Since the general population has a 50% to 60% chance of having one MTHFR mutation, the potential for methylfolate 'normal' ranges being off exists. These are two questions that need to be asked – and will be followed up here. In the meantime, for those wanting to evaluate their unmetabolized folic acid levels and methylfolate levels, I do recommend ordering the Unmetabolized Folic Acid Test by Metametrix. Who should order this test? Those with MTHFR defects Those who have any signs of MTHFR mutations Where do I send my doctor to order this test for me? You send them to Metametrix. What if my doctor won't order this test for me? You may order this test directly from Seeking Health. Please note that insurance is not accepted. Stop guessing and identify if your methylfolate levels are where they should be. Be sure to tell your doctor about this test! Don't Want to Pay for a Lab Test? Rather experiment to see how much Methylfolate you need? If you have been diagnosed with a MTHFR defect, and you want to try taking some methylfolate, what I recommend trying to do is this: Take small amounts of methylfolate along with methylcobalalmin and work up. Consider taking 1/2 tablet of Active B12 with Methylfolate. This amount is typically well-tolerated by many. Increase to a full tablet after 1 week. Continue to increase the amount taken by 1/2 tablet every 7 days until you feel really good. If you feel side effects from taking Active B12 with Methylfolate, take 1/10th tablet of Niacin. Work with your doctor on this and inform them what you are doing. Link to comment Share on other sites More sharing options...
Orion Posted May 23, 2012 Report Share Posted May 23, 2012 I'm under time constraints this morning, just wanted to quickly post a few links for more information and further consideration. Dr. Amy Yasko has been studying genetics and methylation problems in autism for a number of years. She has her own testing and supplement work-arounds she uses: http://www.dramyyasko.com/ This link will connect you to her sites dealing with a number of topics. Dr. Rich van Konynenburg has also been working on methylation problems as it affects the Chronic Fatigue population. Expanding on Dr. Yasko's work, he offers a simplified Methylation protocol:(scroll down to post #7) http://forums.phoenixrising.me/index.php?threads/simplified-methylation-protocol-revised-as-of-today.9447/ He advises correcting methylation should only be followed under a physicians supervision. Link to comment Share on other sites More sharing options...
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