NoelParticipantJuly 3, 2014 at 5:59 pmPost count: 3
I recently found out I have the MTHFR 677 mutation, but am wondering what the symptoms are or damage is from having taken higher doses of folic acid when I was pregnant and again when was diagnosed with microscopic colitis and put on sulfasalazine. If it has caused damage, can it be repaired? I am now taking methyl folate. ThanksIstvanParticipantJuly 5, 2014 at 1:15 pmPost count: 136
Here is our FAQ: https://www.facebook.com/notes/mthfr-support/faq/774091042609135
You’ve been diagnosed with MTHFR, now what is the next step?
Find a good support system. There are many support groups on the internet that will assist you with your questions. Also finding a doctor or nutritionist that understands MTHFR and methylation is very important.
Just because you have an MTHFR SNP does not mean it is expressing. Many people have MTHFR but who are the ones in need for L-Methylfolate?
If folic acid levels are high, this is a strong indication that MTHFR is expressing because people who have this gene expressing will have trouble converting folic into the more active bioavailable form of folate so in turn you will see folate low if they are not getting folate rich foods like eggs, leafy greens, beans and berries.
The next step would be for your doctor to test whole serum folate. If you are eating a diet rich in natural folate such as leafy greens, beans, eggs and berries and your folate is still low, then your doctor will want to consider giving you L-Methylfolate.
Many doctors are giving high doses of L-Methylfolate. When should they consider lower dosages?
When folate levels are not extremely low. Many people have done well on just 400mcg-800mcg of folate daily along with a folate (not folic) rich diet. Giving too much L-methylfolate to certain individuals can cause a back up in high folic acid levels for the folate that they are not utilizing. Unmetabolized folic acid is one of the risk factors in colorectal cancer. Excess folic acid (not folate) can then burn out folate receptors. High levels of L-methylfolate can put a burden on people with COMT V158M and H62H expressing who have a hard time breaking down epinephrine. Methyl donors like L-methylfolate can elevate epinephrine and lead to anxiety and panic attacks in individuals with COMT V158M and H62H expressing.
If folate levels are low what should I be concerned about?
You should be concerned about autoimmune diseases since folate plays a role in the immune system. I myself and many other people with MTHFR expressing have been diagnosed with Hashimoto’s thyroiditis. TSH is not the best test for these individuals. Testing must go much further. T3, T4, reverse T3/ T4 and TPO. Many will not show out of range labs until TPO is tested. Normal ranges for TPO are between 0 and 32. Individuals with MTHFR expressing will show TPO (thyroid antibodies) between 32 and 1500.
What do I do if my doctor will not run these tests or just wants to give me folic acid?
Find another doctor. We have a list started at MTHFR Support.
What do I do if my doctor tells me not to worry about MTHFR?
Again if you have concern, please find a doctor who will listen and run the proper tests before they say that there is nothing to worry about. When MTHFR is expressing there is much to worry about.
My doctor says that my homocysteine is fine so I have nothing to worry about. Is this true?
What is your homocysteine? Many doctors and nutritionists that know methylation and MTHFR are saying that a homocysteine between 6-8 is good and others are saying between a 7-9. If your homocysteine is over 9, there is a possibility that MTHFR and/or BHMT is expressing and if it is below a 6 CBS, MTR and/or BHMT could be expressing. In this FAQ you can see that MTHFR has to do with more than homocysteine.
What kind of b12 should I be taking with my L-methylfolate and how much?
Your dosages should coincide with your b12 levels and many doctors that understand methylation are saying that the B9 (folate) and B12 ratio should be anywhere from 1:3 to 1:5. Methylcobalamin is the most active form of B12 and the one that most doctors that know about methylation and MTHFR prescribe but it is not a good idea for people with COMT V158M and H62H expressing. Individuals with these COMT genes usually need to do hydroxy and/or adenosyl B12. Methylcobalamin can do more oxidative damage to people with COMT expressing. Any doctors reading this will know when giving everyone methyl b12 that they have seen several come back with anxiety anywhere from two days to two weeks of being on high doses. COMT is where you should look at if that happens.
I have psoriasis and when I take L-methylfolate my psoriasis gets worse but I have been diagnosed with MTHFR. What can I do?
Most people who have psoriasis have had pretty bad flare ups when taking L-Methylfolate. First what is causing the hyper reactive immune system should be looked into. What is causing the psoriasis? Diet, gluten,dairy, soy allergy, etc…. And again, just because you have MTHFR does not mean it is expressing.
If MTHFR is expressing how does this relate to glutathione?
When folate is low glutathione will be low. Folate and MTHFR are part of the methylation pathway. Glutathione production is the end result of methylation. Glutathione is Mother Nature’s antioxidant. Without glutathione we cannot detox environmental toxins from the body and disease sets in.
What diseases are associated with MTHFR?
Any disease related to low glutathione.
I’m TTC (trying to conceive) and have been unable to or I have a history of miscarriage and have been diagnosed with MTHFR, is this important to address?
Yes it is. Folate deficiency, infertility and miscarriage is directly linked to MTHFR. Your OB/GYN should know the difference between folic acid and folate. Folate is what you need and folic is not what you need since people with MTHFR have a hard time converting folic into folate. MTHFR expressing has also been linked to autoimmune diseases for example thyroid autoimmune disorders which are linked to miscarriage.
My doctor wants to give me methotrexate but I have MTHFR should I be concerned?
Yes. If MTHFR is expressing and your whole serum folate is low,
methotrexate inhibits folate production.
My doctor wants to put me on oral birth control pills and I have been diagnosed with MTHFR. Should I be concerned?
Yes. Oral birth control pills have been known to reduce folate.
Sterling Hill Erdei
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