I want to find out if i have the factor v leiden mutation. I want to know if i am more at risk for a clotting disorder and consider this with taking yasmin oral contraceptives. I think 23 and me tests for this. Does anyone have experience using 23 and me and understanding how your result shows your risk for the factor v leiden mutation? Or is the 23 and me result vague? Alternatively, if anyone has does the blood test (for ex at Labcorp), can you tell me how much the test cost? I am just wondering if it is in the $hundreds range or $thousands range? We have a $6000 annual deductible.
Something to consider:
I had it done because the same factor runs in my moms side of the family and out of caution I wanted to know before going on BCP. I don’t recall that it was an expensive test and we also have a big deductible. One thing to consider is purchasing life insurance before getting the test as it may be hard to get if you do test positive.
If you are negative for Factor V Leiden the 23&Me Report says this:
"0 variants detected in the F5 and F2 genes
Tests for the Factor V Leiden variant in the F5 gene and the Prothrombin G20210A variant in the F2 gene linked to hereditary thrombophilia."
I think they are testing for only one pathogenic SNP.( the most common one) in the F5 gene. The variants they test for are the ones that usually cause disease in people of European ancestry, although other races may be affected as well but less commonly. There may be other less common SNPs in that gene that can also cause disease, and they are not tested for in the 23&Me service,
Does it test for things like Factor XI Deficiency? I kind of wish we hadn’t discovered my husband and three kids have it. DH has had several incidents with bleeding in his life before the diagnosis, and he never had any issues with excessive amounts. But now he has to use a med, recombinant Factor XIIa, that costs about $15,000 per dose, before any surgery. He can’t decline it.
^^No, 23&Me does not currently offer a report on your genetic hemophilia status. But you can download your genetic raw data from 23&Me and upload it to other sites that for a small fee will report your status on just about every trait and genetic health risk that is known. But those sites are much more scientific and statistical in nature - not geared toward the general public. So you need to be your own scientist to interpret those results.
Promethease is one site that lets you upload raw data from 23&Me and screen for variants. It provides a variety of filters to allow you to customize the search. It works best if you are searching for a specific variant, the general categorization of variants as “good” or “bad” should be taken with a huge grain of salt.
The SNP for FVL is rs6025. (I did the bloodwork years ago. 23andme successfully picked it up.) It’s also easy to download the raw data file from the ancestry package of 23andme and search for that SNP. And/or run it through third-party sites like Promethease. SNPedia is also a fun site for searching up conditions and some of the SNPs that may be associated with them (and then searching the raw data file for the rs number).
If you have a personal or family history of clotting already, I’d suggest going with a bloodwork panel. I haven’t checked, but I doubt all the relevant mutations/polymorphisms are simple to find via 23andme.
OP, do you have a family history of Factor V? If so, you are spot-on to be cautious. I had my test at a regular lab; it was about $300 at the time, but that was ~10 years ago. You might try calling LabCorp to see if they can give you an idea on the cost.
I have Factor V; my mom had it as well. Her dr recommended I get tested, and my oncologist thought I was nuts til it came back positive. I found out in my mid-40s. I was on BCPs for about six months in my early 20s and quit because I kept having leg cramps. Glad I read the warnings, because I also had polycystic ovarian syndrome and that was the standard treatment at the time. Docs kept recommending I take them and I’d mention the leg cramps and they thought I was overly cautious. My dad has a rare clotting disorder (Proteins C and S) which one of my sisters inherited; my other sister also has FV. Neither of our brothers do.
I have a 25 yo nephew who is FV positive (son of my sister with FV) and he has been declined for life insurance, as he threw a clot after surgery for a torn ACL.
I’ve had a big life insurance policy since before the diagnosis - they didn’t check for Factor V back then. They have never come back to re-rate me. I make sure those premiums are paid on time! 
Both my sons are negative; they were tested several years ago.
This stuff is why noone in my family wants to do 23andme.
I have Prothrombin 20210A, which is similar to Factor V Leiden. I had my daughter tested and I don’t recall the amount, but it was not noteworthy.
There are many other tests besides Factor V Leiden to see if you have clotting issues, though that is the most common. Of course if you know you have some sort of inherited risk, you would want to test for that specific thing. My husband was negative on all the blood clotting disorder tests they gave him, and still ended up with two blood clots. Blood clots can be fatal. Cause strokes, pulmonary embolisms. And after you’ve gotten a deep vein thrombosis, they are always at greater risk to develop in the same area.
A more important question is why you would even consider birth control pills with drospirenone in them. It is unnecessary and more dangerous. There are so many other birth control pills out there. Why take the risk? Even if you accomplished every possible known test out there for blood clotting, there are many things they still are unable to test for.
So I am positive also and found out in the hospital after they ran the test after my first dvt. I had another one 1.5 years after. Now I take 325 aspirin daily and wear support compression socks that look like men’s dress socks mostly.
The question is if a family history what would you do with that information? Eat better? Excersise more? Just do that stuff now.
Also just because you have a gene for it doesn’t mean you will ever get a clot etc. If fact there is not a lot of proof that you will like with other gene testing.
Personally, I,Just don’t see the benefit of it. I would discuss this with your doctor on your next visit personally if you have any concerns.
^OP is talking about whether to take oral contraceptives, which, depending on who one asks, are contraindicated in the presence of FVL.
I would speak with a hemotologist on this. There most likely is more of a risk with birth control and smoking then with FVL. Thanks… I didn’t read the entire thread and it’s a good question to ask your doctor.
One can take effective birth control pills that aren’t Yasmin (which contain drospirenone, with a significantly heightened risk of blood clots). Is whatever positive that is advertised by this type of pill worth the additional risk?
I haven’t looked at this issue in years so I don’t know what’s new, but most, as in virtually all, oral contraceptives would be out. Yasmin isn’t unusual in that regard. (I have a young adult relative with FVL who has crossed this category off completely in the weighing of various ways to handle pcos.)
For us old ladies, HRT is also contraindicated.
@Evergreen5, I know that metformin (a diabetes med) was suggested to women with PCOS as an alternative to BCPs. The thinking was that PCOS and diabetes can run together and that this could be helpful. My docs never suggested it, but I didn’t find out about the FVL until I was perimenopasual anyway.
My sister with FVL threw a PE at age 51 and is now on Eliquis and baby aspirin. She also had PCOS, though not to the extent I did. Both conditions run in our family.
The docs don’t believe my cardiac arrest was due to FVL, but I was on a chemo drug at the time that has been found to produce clotting. I’m on 81 mg aspirin and warfarin out of an abundance of caution, esp since both of my parents and both sisters have thrown clots.
^yes, metformin is definitely another way to go for that.
I’m curious about whether there were any additional factors besides FVL that are assumed to have led your sister’s clot as I am close to that age. Yikes. (My mother is on eliquis for clots too.)
My sister didn’t have any other risk factors. No diabetes, normal BP, normal weight, active. Because of our family history, she knew the symptoms and got to a hospital quickly. Her S (I mentioned above) also threw a clot after ACL surgery. He was a Div I athlete in college and is still in exceptional shape.
@CountingDown… I am having medial meniscus surgery on by knee next week… Don’t want to hear that ?.
So funny though the surgeon wanted me off all Aspirin etc till he knew I take 325 aspirin as a preventive for clots. Now it’s like OK… But he and my doc suggested going to 81 g baby aspirin prior to surgery then resuming the 325 after…