Hyperhomocysteinemia with MTHFR C677T mutations. Does anyone have this

Posted by ronniekep @ronniekep, Nov 8, 2018

Hi, I took a DNA test to see what medications I could not take and while finding out, I would out I carry this gene. Does anyone else have this? I know I am not alone! I have raised my folate and B12 and B6 but I delay the response to antidepressants.

@msfxit

He put us both on Folinic Acid 500 per day. We both have migraines with aura anemia lethargic and I have narcolepsy also. We took our first dose yesterday I was fine but I ended up taking my daughter to hospital she had an allergic reaction. Her throat closed up and she got an itchy rash

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After your daughter had reaction what was prescribed she take. My daughter in same boat

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I've suffered from fatigue, IBS and brain fog. Upon my requesting the test a few years ago I confirmed I was homozygous C677T. I really haven't been able to find a doctor to help me with this. Finally I got a lab test that showed quite a high homocysteine level. I'm also starting to get elevated cholestorol for the first time, and have elevated blood pressure. I have just requested an appt at Mayo Clinic but am interested to get feedback from others for the time being. Gives me hope seeing the results tamikay had, but I still need guidance. There's so much information out there and I had one doctor that supposedly specialized in this, but think his model was to prescribe his supplements at huge mark ups and I was very skeptical after spending a lot of money.

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@tamikay

2 months ago my doctor tested me and I have the double mutation. I have completely changed my diet . Back to eating like the Indians and pioneers. I also take 5000mg of folate and metholated b vitamins . I use a hot tub to sweat and detox 5 times a week. I am a new person 😁 I feel fantastic. My doctor is very pleased. My anxiety and depression are completely gone, I sleep way better, less pain, more energy and the list goes on…. I focus on all the good food I can eat and not on what I can't eat. This is a be a real break through for my family . Lots of pernacious emina , mental illness, strokes , cancer etc …have plagued my family . Feeling well

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are you still feeling well? I would be very interested to know if you have learned anything else?

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welcome to the MTFHR club. not a club anyone wants to be in. wife and daughters are stable and have been for quite a while. she has the double gene mutation. her thoughts are to not eat anything with folic acid in it which is the synthetic form of folic acid and have nothing with more than 4% iron content in it. check the package. this means that anything that says "enriched" is not good for you. most breads and pastas are enriched. meat and potatoes and veggies are the basic menu. Aldi's grocery chain has European products and some of those pastas are ok. Brioche bread is usually ok and Walmart carries it and the kind we get is not enriched. it will take a while to get your system absorbing the good food. have any more questions, please let me know. wife does take meds for high cholestorol but has low blood pressure.

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@hodagwi

welcome to the MTFHR club. not a club anyone wants to be in. wife and daughters are stable and have been for quite a while. she has the double gene mutation. her thoughts are to not eat anything with folic acid in it which is the synthetic form of folic acid and have nothing with more than 4% iron content in it. check the package. this means that anything that says "enriched" is not good for you. most breads and pastas are enriched. meat and potatoes and veggies are the basic menu. Aldi's grocery chain has European products and some of those pastas are ok. Brioche bread is usually ok and Walmart carries it and the kind we get is not enriched. it will take a while to get your system absorbing the good food. have any more questions, please let me know. wife does take meds for high cholestorol but has low blood pressure.

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Thanks for taking the time to comment. I'm excited to start this journey which hopefully will lead to improved health.

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just changing eating patterns will help a lot and will take a while to have the cells respond to food that they can absorb.

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@hodagwi

Hi, my wife and her three daughters have this. she had done a lot of research and her eating habits have changed drastically in not eating any foods with enriched flour or anything enriched. She has the double gene mutation. A lot of people are helped by following the gluten free diet since it eliminates enriched food from her diet but it is the enriched part that is an issue not the gluten. If you google MTFHR, there are many references and places to read. Most doctors do not know about this. She was diagnosed at Johns Hopkins in Baltimore. She has found one person who works in a local pharmacy that has been a great help in knowing what to do. Avoid folic acid which is a lot of what is in enriched food items. You want the natural folate not the synthetic folic acid. The natural folate will be absorbed by your body but the folic acid will not be absorbed since the MTFHR gene will block it. This is an on going issue and she would be happy to talk to you more about this. Symptoms were exhaustion and her body felt like it was trying to kill her but her blood tests came back ok but the nutrients in the blood were not being absorbed by the body. An "extreme" blood test is needed to determine what is being absorbed by the body not just what is in the blood. MTFHR is genetic and can be passed down to kids. This problem can also have significant implications for women interested in having children. doctordoni.com has articles on this and to search. Let me know any other questions.

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Hi, Do you mind providing the name of the doctor at JHH who diagnosed your wife? I'm seeing someone there for another condition and I think I might have this gene mutation also. Thank you in advance.

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@pkw3617

Hi, Do you mind providing the name of the doctor at JHH who diagnosed your wife? I'm seeing someone there for another condition and I think I might have this gene mutation also. Thank you in advance.

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@pkw3617 Welcome to Mayo Clinic Connect. You suspect you have the MTHFR C677T mutation and you are looking for the provider @hodagwi speaks of. I'm wondering what mental health concerns you have so I can connect you with other members that may have a similar situation?

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@eErika is there a board for MTHFR gene mutations? I have MTHFR genetic mutation too. Connecting with others who have it and see knowledgeable is extremely beneficial.

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@gldnrtrvrlvr

@eErika is there a board for MTHFR gene mutations? I have MTHFR genetic mutation too. Connecting with others who have it and see knowledgeable is extremely beneficial.

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single or double mutation? was diagnosed at John's Hopkins in Baltimore…still issues with enriched foods and vitamins. what are your questions? wife has it so has dealt with it for about 10 years.

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Johns Hopkins doctor is Jack Ratchford. This was there in 2014 and don't know now. Not many doctors have any experience with this. Wife has double gene mutation of this. Not aware of any boards that deal with this. Sometimes the doctor or family member or nurse have the condition so then know what it is all about. A woman that works at a holistic pharmacy in Salisbury, MD has it as do her kids. CBD is not a problem with this. She avoids all enriched foods/synthetic foods and it usually says on the label whether enriched…

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@erikas I found a pharmacist at a compounding pharmacy who was my first source of information and was a gem on knowledge. Since then, I've done a lot of research on my own via NIC, John Hopkins, and other well-known institutions, plus some other alternative options. Thanks for your response.

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