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Anyone have factor 5 Leiden?
I just got tested for factor 5 and it came back positive. I'm just a little scared because I am nervous I'm going to throw a pulmonary embolism or have dvt. If you have factor 5 or know someone that does, I would love to know how you/they are handling it, and what you are using for birth control! My mid-wife said progesterone only, but I'm not very familiar with these types of bcp's. I've only used ones with estrogen. TIA! 
Re: Anyone have factor 5 Leiden?
It runs in my family. I would immediately ask for further testing, as it is important to know if you have 1 copy of the gene or two. That significantly changes your odds of ever having any ill effect from the gene.
If you are pregnant your midwife may need to take extra steps to make sure you do not develop blood clots while pregnant. It also provides an increased risk for miscarriages, and people are often tested for the gene (especially if they are white and of European descent) after having several as a possible cause for why they are happening. It also gives more risk of Pre-eclampsia.
The only daily activity changes that I know of to be recommended are - increase your circulation by not sitting still for extreme long periods - especially really long air flights or car trips. Tell any doctor who may have to operate on you, so they can be on the look out for any issues. Also the one you mentioned, non-estrogen birth control. As far as the goes, the IUD is a great option.
Hope this helps!
I have it, heterozygous Factor V Leiden. I found out when I got a DVT 2 Christmases ago. I had to be on Warfarin for 6 months. I was told not to fly long distance for a year. It really hasn't really affected me beyond that. I just pay attention to my body to be sure I don't have a DVT again.
I have had multiple miscarriages that may be a result of it. I also know that you are at a higher risk for pregnancy related issues. I think it is easy to live with, but if you have any questions ask!
Oh and I have had surgery after finding out and they put special leg things on me so I didn't develop a clot.
Because I have problems with all other B/C and I don't want children I got sterilized. If you don't want kids for a while the paraguard IUD is a good choice.
No, I didn't have the usual symptoms, it felt like I had a charlie horse for that lasted for 6 days I decided to get it looked at after some of the caring ladies here on the nest suggested that it might be something serious. They did an ultrasound and found it. I had no swelling or anything, the area was warm to the touch, though.
As for Mirena, I would still suggest Paraguard it doesn't have any hormones while Mirena has a small amount and I don't think it is worth the risk.
I don't have factor 5, but I have MTHFR and Anticardiolipin clotting factors. I have had one pulmonary embolism and was on Coumadin for a year with weekly protime testing.
My OBGYN said no hormones at all, so I have my tubes tied. PM me with any questions.
224 Ready to Celebrate
OK So I don't have factor 5 but it does run in my family. Also I am 24 years old and at 22 I had a DVT that split shot to my lungs and caused and Double Pulmonary Embolism (due it BC and other factors). I can NOT take BCP or any kind replacement hormone (sp?). I can and do have an IUD, the mirana, it has its goods and its bads. Whenever my H and I decide to have kid I will have to go on heprin (blood thinners shots daily to twice daily).
Anyways to get back to you see if you can get an IUD for BC or use condoms. I'm not sure if about progesterone only pills my doctor never told me anything about that (my blood Doc or OB/GYN). Also make sure to stick with a good rounded out diet that will help your blood thinner levels and last but not least now with being on blood thinners be careful how much you drink. You don't have to stop but trust me there were time when I thought I didn't drink much at all and ended up in a very bad place. As long as you follow your doctors and your meds closely you will be great and wont even know anything is wrong.
Make sure you carry a medical card that states you have Factor 5 and what blood thinner meds you are on. My relatives (sp?) that have it live full and great lives, traveling, have kid, and all the stuff they use to due before they found out. Good luck and don't be worried you will be fine!
I was told that pregnancy was extremely dangerous (hence have the tubal ligation), and if I really wanted to attempt a pregnancy that I would need intensive medical supervision and daily injections of Heparin (Coumadin can't be taken while pregnant.)
Thanks for all the advice! I'm hoping my mid-wife will call me back next week and explain to me more about my genetics about pregnancy.
Hetro Factor V, mutliple DVT's, now on thinners the rest of my life. I go in once a month to get my INR cheked.
My current hematologist wasn't too "impressed" with the Factor V part. He said that all it told him was that I am or have ancestors from a European country. Yes, it upps my risk but being overweight and on estrogen based BCPs were also risks. There are different reason why people throw clots and why you throw them figures out which path you take after the standard 6 months of thinners.
I have been on progestrone only BCP's for a few years now (switched with the first DVT and now with the 2nd). You have to take them within the same time frame every day (like 2 hours or so) to be most effective.
As for pregnancy, I have already talked to an OB that specifically only has patients with clotting disorders. Yes, I'll have to be on lovenox which is an injection (twice a day) for my entire pregnany and at least 6 weeks post partum. Yes, I'll get monthly ultrasounds after 20 weeks due to issues with low bith weight and placenta previa but this OB (and I'm sure there is a "high risk" one near you) has had many years and many successful pregnancies with women with Factor V and on thinners (like me).
You can PM if you want but definately talk to your doc and they can give you all the info you need to make an informed decision.
I do. I use Mirena IUD. Before that just condoms.
I did daily injections of blood thinners during pregnancy as a precaution because there's risks that another poster covered up there ^^. I have never had a clot, but due to family history I was tested as a teenager. My mom had 3 clots in her early 30s but no pg complications. I've also never m/c. I'm happy my ob was so proactive.