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Old 01-13-2015, 12:19 PM #1
wildcovey wildcovey is offline
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Question MTHFR and VIT. B-12

I recently had bloodwork done for MTHFR and the results showed positive for one copy of the C677T variant and one copy of the A1298C variant. From brief research, I understand that these variants can affect Vit B-12 and folate methylation.

I have been on Jarrow Methyl B-12 5000 mcg: 1x per day – first thing in morning on empty stomach for quite some time.

My B-12 level was 1406 in the standard range of 200-1100 pg/ml. I did not stop taking the vitamin prior to having labs done. Also I started taking Methyl Folate Jarrow 400 mg/1x per day with food.

Any recommendations on testing my B-12. Should I have stopped taking it prior to testing. Also should I have my folate levels checked and if so should I stop taking it prior to testing.

Tony
Missouri
Idiopathic Small Fiber Neuropathy
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Old 01-13-2015, 12:30 PM #2
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Wink

Stopping the B12 3-7 days before the test is best to get a clearer
result.

But your high value does demonstrate that you are absorbing from the GI tract well. So it was not for naught. Since you are taking the methyl form, there is no question as to cyano not working, etc.

You don't need to test again, unless you want to.

Now that you have had the MTHFR testing, you understand why you need to be on these for life, now. Its a good thing you had that testing done, IMO.
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Old 01-13-2015, 02:03 PM #3
wildcovey wildcovey is offline
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Question

Thanks for your reply, Mrs. D. Your insight is invaluable. Is there any data showing these MTHFR variants aid in the cause of neuropathy?

Also I'm at a crossroads with my current neurologist at Washington University in St. Louis. My third punch skin biopsy since 2011 came back in the normal range. I have both sensory and autonomic symptoms occurring and when I asked him if I had SFN, he stated that his best guess based on my information was yes. My blood work has all come back normal and when I asked him if there was another neurologist that I could talk with about my other symptoms, he recommended MAYO. My question is, "Is MAYO the gold standard of places to go".

Tony
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Old 01-13-2015, 10:49 PM #4
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Quote:
Originally Posted by wildcovey View Post
Thanks for your reply, Mrs. D. Your insight is invaluable. Is there any data showing these MTHFR variants aid in the cause of neuropathy?

Also I'm at a crossroads with my current neurologist at Washington University in St. Louis. My third punch skin biopsy since 2011 came back in the normal range. I have both sensory and autonomic symptoms occurring and when I asked him if I had SFN, he stated that his best guess based on my information was yes. My blood work has all come back normal and when I asked him if there was another neurologist that I could talk with about my other symptoms, he recommended MAYO. My question is, "Is MAYO the gold standard of places to go".

Tony
I recently went to Mayo after being told by several doctors to go there. It seems like that is in the mind of most doctors. Mayo pushed for another EMG (even though I had no symptoms besides pain. They also did a Sweat test without insurance approval. I asked for a skin biopsy and they did not feel like it was indicated. The neurologist did not even believe my symptoms.

Mayo is very efficient and will do the high cost tests and most likely start all over again.

Later, I had a skin biopsy that revealed marked nerve fiber loss in lower extremities (SFN).

I also know from the boards that a negative skin biopsy does not mean that you don't have SFN. It can be diagnosed from exam.

Good luck with your decision. It is a crap shoot with SFN knowledge. Even well renowned Neurologists don't seem to get SFN.

My 2 cents.

Good luck to you!
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Old 01-20-2015, 03:47 AM #5
Riverratbrat Riverratbrat is offline
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Quote:
Originally Posted by wildcovey View Post
I recently had bloodwork done for MTHFR and the results showed positive for one copy of the C677T variant and one copy of the [SIZE="5"[/SIZE]A1298C variant. From brief research, I understand that these variants can affect Vit B-12 and folate methylation.

I have been on Jarrow Methyl B-12 5000 mcg: 1x per day – first thing in morning on empty stomach for quite some time.

My B-12 level was 1406 in the standard range of 200-1100 pg/ml. I did not stop taking the vitamin prior to having labs done. Also I started taking Methyl Folate Jarrow 400 mg/1x per day with food.

Any recommendations on testing my B-12. Should I have stopped taking it prior to testing. Also should I have my folate levels checked and if so should I stop taking it prior to testing.

Tony

Missouri
Idiopathic Small Fiber Neuropathy
I had a severe head and neck injury! And was wondering if anyone would know if my injury could have caused my folic acid cell to be injured? I have been doing my own research and have learned a lot! I too am taking both supplementals for B12 diffencency. Any advice or what doctor to see would be helpful!! My injury is also work related and because of it I have been swept under the carpet with time now 5 years I have progressed to no return


Sincerely Riverratbrst
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