MTHFR Mutation

Posted by doriejean @doriejean, Feb 3, 2023

I was born with MTHFR Mutation. I've had all the symptoms of this mutation all my 82 years of life including mental illnesses.
I now have a Southern Illinois Medical School professor who understands this disease and has ease the symptoms that have plagued me all my life.

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Profile picture for lizthepa06 @lizthepa06

Hi @cormer,

I have the same conditions…diagnosed 22 years ago. I have spent a lifetime trying to find real healing from all of this and just recently found out about the gene mutations.
I would love to hear more about your journey and what helps.

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@lizthepa06, welcome. There’s been concern that certain health issues may be associated with MTHFR mutations, so testing has become more mainstream over the years. MTHFR status may or may not be affect health. More research is needed to determine the true impact, if any.

Have you had genetic testing to confirm that you have a MTHFR genetic mutation? You may wish to ask your doctor about the benefits and risks of testing.

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Profile picture for contilucy1960 @contilucy1960

I have been taking up to 11 vitamins and supplements a day as prescribed by a doctor 7 years ago, due to MTHFR gene mutation. I would like to update what supplements and vitamins are needed for this condition. Any input welcome!

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I found this discussion searching for answers re: old genetic testing (prior to it officially being considered a “real” concern) revealing that I have two polymorphisms, both C677T and at least one copy of A1298C. If Mayo Clinic recognizes this as affecting health and requiring special nutritional/supplemental intervention, then where must I look for their stance on this condition? How do I schedule an appointment if I can’t find the proper department? I have a huge cluster of health issues and have had since youth including MTHFR related cancer and need current and official genetic testing for insurance and need proper nutritional guidance. My small-town clinic has not been helpful.

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Profile picture for inminn @inminn

I found this discussion searching for answers re: old genetic testing (prior to it officially being considered a “real” concern) revealing that I have two polymorphisms, both C677T and at least one copy of A1298C. If Mayo Clinic recognizes this as affecting health and requiring special nutritional/supplemental intervention, then where must I look for their stance on this condition? How do I schedule an appointment if I can’t find the proper department? I have a huge cluster of health issues and have had since youth including MTHFR related cancer and need current and official genetic testing for insurance and need proper nutritional guidance. My small-town clinic has not been helpful.

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@inminn, you're asking good questions. I recommend calling Mayo Clinic and talking to a scheduler about where to start, possibly Clinical Genomics. http://mayocl.in/1mtmR63

Clinical Genomics https://www.mayoclinic.org/departments-centers/clinical-genomics/overview

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Profile picture for contilucy1960 @contilucy1960

I have been taking up to 11 vitamins and supplements a day as prescribed by a doctor 7 years ago, due to MTHFR gene mutation. I would like to update what supplements and vitamins are needed for this condition. Any input welcome!

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I did try to secure an appointment with endocrinology, because I had been seen there before so was advised to try there first but my request was rejected. I’ll try Genomics, thank you.

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I have been diagnosed with MTHFR. Had my vit B tested and it is over 2000. That is the highest amount that labcocrp can test for. I am worried for the health of my liver. Can anyone tell me how to detox this from my liver?

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Profile picture for terriss @terriss

I have been diagnosed with MTHFR. Had my vit B tested and it is over 2000. That is the highest amount that labcocrp can test for. I am worried for the health of my liver. Can anyone tell me how to detox this from my liver?

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Welcome @terriss, It can be scary to get high levels of vitamins on a blood lab and not know what to do. I don't have any personal experience with the MTHFR gene or high levels of vitamin B12 but hopefully others with experience can offer suggestions. You might find the following older discussion helpful to read what others have shared.
--- High Levels of Vitamin B12 and Ferritin: Any pointers?: https://connect.mayoclinic.org/discussion/high-levels-of-b12/.

You might find this information from the Pernicious Anemia Organization helpful:
--- What Do High B12 Levels Mean?: https://perniciousanemia.org/b12/levels/high/

Have you discussed the test results with your doctor or primary care team to see if they have some suggestions that can help lower the numbers?

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Profile picture for terriss @terriss

I have been diagnosed with MTHFR. Had my vit B tested and it is over 2000. That is the highest amount that labcocrp can test for. I am worried for the health of my liver. Can anyone tell me how to detox this from my liver?

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Please don’t worry! B12 is water soluble and will not harm the liver. A high level means that it’s just circulating in the blood and not being used by the body, especially if you’ve taken supplements. A hematologist will check for pernicious anemia and get you on track. Perniciousanenia.org has lots of info. Best wishes!

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MY MTHFR has caused mental illnesses ADHD, OCD and anxiety as well as B-12 and Iron deficiency. At 83, I know when my B-12 and iron levels have dipped and increase amounts taken until they have leveled out.
Do others have to do as I do?

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Profile picture for doriejean @doriejean

MY MTHFR has caused mental illnesses ADHD, OCD and anxiety as well as B-12 and Iron deficiency. At 83, I know when my B-12 and iron levels have dipped and increase amounts taken until they have leveled out.
Do others have to do as I do?

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@doriejean

I did a search to learn more about this. Here is what I found from the National Library of Medicine since I didn't know anything about this. This article shows that a test for this could be done for estimating the risks of developing blood clots that lead to early blood vessel disease or heart disease.

MTHFR Mutation Test:

-- https://medlineplus.gov/lab-tests/mthfr-mutation-test/

Why did you have have this genetic test?

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Profile picture for doriejean @doriejean

MY MTHFR has caused mental illnesses ADHD, OCD and anxiety as well as B-12 and Iron deficiency. At 83, I know when my B-12 and iron levels have dipped and increase amounts taken until they have leveled out.
Do others have to do as I do?

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I had been having anemia, sensations of floating out my body, constant obsessions that I couldn't control, unrelenting diarrhea, sensitivity to sun light. Earlier in my life during my childbearing years I had trouble conceiving, chronic Anemia and fatigue. In my childhood I had migraine headaches that sent me to bed for three days. I didn't have a good childhood, my parents fought all the time.
I looked back at me relatives and my aunt had pernicious anemia.
My daughter who is a registered nurse studied my symptoms and told me to get a B-12 test. The conclusion was I had B-12 deficiency. I researched everything about the deficiency and had a genetic test done in Utah. That is when I found out I had MTHFR Mutation from both my parents.

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