neonicacid
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neonicacid21 karma
What is something you have learned, due to your condition, that you think could be useful to other people in their lives?
neonicacid18 karma
In addition to what the others have said, certain supplements (and medication) can have blood thinning effects. Turmeric, cinnamon, and ginger, for example.
neonicacid6 karma
Not OP, but I have the same condition. I've personally taken warfarin and Xarelto, and I really enjoy the freedom that Xarelto provides as far as not worrying about food intake and supplementation (My girlfriend is a chef and I enjoy being an n=1 guinea pig, haha). You also get to skip the routine visits to check INR with your doctor. I believe that all the factor xa inhibitors like Eliquis, Xarelto, etc. offer this, so it's more of a testament to the class of drugs as a whole. However, they are quite a bit more expensive than warfarin, so it's kind of a tradeoff. Thankfully, the insurance I have has made it fairly reasonable for me to take Xarelto instead of warfarin without breaking the bank.
neonicacid3 karma
Not OP, but I have the same condition with fewer clotting events. As far as I'm aware, FVL is fairly common among Caucasian people (something like 1/8). My hematologist believes it's a genetic holdover from earlier when clotting more/faster may have saved your life as opposed to bleeding to death. Of those that have it, I've read about 1/10 ever have an adverse event from it. So, that means your wife, if she hasn't already had one, has something like a 90% chance to be completely fine. Knowing that you have it can also probably boost the odds of not having a problem from it, too. The only time I'd be a little extra cautious would be with things like pregnancy, as it may play an extra role there that needs to be managed, and also the risk of passing it on to the child.
neonicacid27 karma
https://pubmed.ncbi.nlm.nih.gov/22531131/
https://pubmed.ncbi.nlm.nih.gov/20828311/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6594244/
Here are some studies that I found for you. Granted, some of the effects are small or not well studied, but I also don't think that supplementation is a replacement for medicine or talking with a doctor about clotting risk - especially if you think you may have a clot already. My family member has the same clotting disorder as OP, and it kind of slipped under the radar until I had a DVT/PE of my own. Now I'm diagnosed with it too. Had I talked with a doctor about preventing clots due to that person's diagnosis, I may have been able to avoid getting a clot and spending over a week in the hospital.
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