I just got my genetic tests back also and I have this defect also. My doctor said this test is relatively new and yes it does make you more predisposed to clotting. But this also might be why you cannot find much online.

MTHFR in itself is not a concern, however, people who are homozygous for MTHFR have a greater risk of having elevated homocysteine levels which is a risk factor for venous thromboembolism. I was diagnosed back in 1996 with MTHFR homozygous with moderate level of homocysteine. That, combined with my Factor V Leiden was believed to have been the cause of my multiple DVT's and PE. The following article written by a leading thrombophilia expert and a thrombophilia genetics counselor further explains:

http://circ.ahajournals.org/content/111/19/e289.full

Thanks for the link Retired nav. It was my high homocysteine level that prompted the haem to test for the gene defect. I've been told to take frolic acid , B 6 & B12 to try and bring the levels down although the literature seems divided over the effectiveness of this approach.

mj568,

I was on folic, B6 and B12 therapy from 1996 to 2007. I stopped it after discussing with several leading blood clot researcher whether or not the 2005/2006 studies were accurate or not. Basically, the studies showed that even lowering homocysteine levels did not prevent future arterial or venous clotting. Plus, there are a few studies which "suggest" that long term folic acid treatment can lead to cancer. So, I stopped taking it.

Regressing, back in 1999-2000 I had come off Coumadin since the theory back then was my elevated homocysteine levels combined with FVL is what caused the clotting and now that my homcysteine level were normal, I would be fine. During that short duration of being off coumadin I suffered several superficial clots. In late 2000 I was asked to be part of the PREVENT Trial (low intensity Warfarin Treatment). Since than I had been on Coumadin. Last November I made the leap to Xarelto.

I wish you luck. As with anything in science, the pendulum may swing back the other direction one day and say folic/b6,B12 may be beneficial in preventing clots for patient with elevated homocysteine levels. All things are possible.

R/Tom

I learn something new all the time on this board. Things to ask at my next doc visit, like the MtHFR gene. Thanks.

RetiredNavy,
How are things with your switch from Coumadin to Xarelto? You seem to be very knowledgeable on many topics with regards to PE/DVT. What was your reasoning to the switch and are there any side effects? Did you do for convenience, no more INR checks and issues with diet? With it being a newer drug verses Coumadin, does that worry you at all? What about reversing the drug if ever needed? If I have to stay on meds, I might want to switch. Anyone else that made the switch, please feel free to comment.
Thanks.

FGtri,

My reason for switch was patient quality of life (no INR tests, no food interactions). After being on Coumadin for roughly 20 years and reviewing some of the data from the studies, I decided to make the leap to Xarelto despite the unknowns (long term side affects, whether single size dosing really works, no currently approved reversal agent).

As far as DVT/PE, I spent 10 years trying to make a difference for our patient group as a patient advocate for VTE awareness nationally (now retired from that volunteer work).

where did u go the volunteer work?? I think there needs to be more awareness and education on options for treatment..if I hadnt done my own homework I would be stuck with Coumadin for life. I start Xarelto tomorrow...i am a lifer too and wanted a better quality of life..

You can volunteer with organizations like the National Blood Clot Alliance (www.stoptheclot.org) or the North American Thrombosis Forum.

Some members of this forum have done fund raising events for NBCA. Check out their website, they are a gkod group to get involved with andare our patients community's equivalent to the American Heart Association.