Well, I wouldn't categorize it as necessarily crucial. Some docs don't recommend the testing and some do if they think the clots are caused by birth control. I don't think either approach is right or wrong, but just the protocol of that specific doctor.

My clots were originally attributed to birth control but I had genetic testing for my clots performed twice. The first time was while in the hospital, before I was put on warfarin and I was off heparin for a few hours for a procedure so they did it then. And I had testing done one more time, after I got a second clot. Both tests were negative for clotting disorders. It ended up that my clots were not caused specifically by birth control since when I tested the second time, I'd been off birth control for like 7 months. But they don't really know the exact reason why I clotted either. I do have an autoimmune disease that increases the risk for clotting but that's about it. Sometimes it's not one thing specifically that causes the clots but just your body and some kind of perfect storm of things happening all at once for which we can't necessarily identify or understand.

Docs first look to the obvious risk factors. That would be any kind of estrogen birth control. But if it's nagging at you, can you get a second opinion? The blood tests can be ordered by anyone, even a GP. Or another Hema.

I didn't have the tests after my first clotting incident either. It seemed pretty clearcut for me ... birth control pills. I went off the pills and I was good for four years.

At four years, I was convinced to take a "safe" birth control pill that had only progesterin. Six weeks later, I got a second clot. My doc ran blood tests and sent me to a hema, who ran more. I was negative for everything. We decided it was obviously any type of hormone causing me to clot and I came off the warfarin at six months.

Four months later, I had multiple PEs in both lungs. No idea of the cause, since I hadn't had anything hormonal in almost a year at that point. More tests with the hema and I was still negative for everything.

I guess what I'm saying is that it can be very common for blood tests to not be recommended after just one clotting incident that has a clear cause. More than one, though, and they almost always do the tests. Of course, they might not find anything.

I think some doctors don't recommend the tests in a case like yours just because they're super expensive and not everyone wants genetic testing in their records.. However, if the patient wants them (and can afford them--or their insurance will cover it), I don't know that it is worth arguing against, especially if it will help you feel more in control of the situation.

I'd get a second opinion, if possible.

Check out the Dr Stephan Moll article about length of treatment that RetiredNavy02 posted here: http://www.dailystrength.org/c/Pulmonary_Embolism/forum/20343797-factor-v-leiden

From what Dr Moll says clotting disorders mostly don't change the treatment, but depending on your personal risk factors it may or may not be relevant. From what you said, though, I do wonder if your doctor is giving appropriate weight to the possibility that you have had recurring clotting episodes? If it didn't come up in today's discussion I would raise it with my doc, just to make sure that they hadn't forgotten or never known about your previous history of PE symptoms.

Re "Once again, I kind of feel like I'm being dismissed because I'm relatively young (35) and a non smoker.", I know it's scary but if the doc says the same thing with your 1.5 year history top of mind, try to remind yourself if you can that it may just be that those factors reduce your personal risks of clotting enough that it's safer for you to risk another embolism than to take on the bleeding risk from staying on blood thinners (in other words, getting treatment might be worse than the disease for you personally).

I have a superstrong family history of PEs, but my hematologist also says the genetic testing wouldn't change the treatment.

Seethur,
I agree with most here. If you would like the tests, get a second opinion. Everyone is different in how we view treatment. My opinon is that if your clotting produced a PE, it is serious enough to get the tests. Being a guy I can't speak on the BC. But my PE/clots were a result of a surgery/walking boot. And the fact the clotting was severe and the PE massive, I went on Xarelto 18 mos under direction of hematologist. But as Dr. Moll's article points out, most are recomended 6 mos of thinners if clot is provoked by a minor temporary/transient risk factormy similair to my procedure. Now, after 18 mos, my Hematologist suggested we do the testing. I actaully came off Xarelto this Sunday, and get tested in 2 weeks. I have some residual clot in leg, so if one of the disorders shows, we have to decide if risk of reclotting is high enough that I go back on Xarelto for life. If no disorder, we will stay the course for now without Xarelto. And these decisons can change too! I can always go back on.

So I think every person needs to come up with their own plan with their doc that they are comfortabe with. I just want to be educated about all factors/variables when making my health decisions. So the testing is valuable information in my opinion. I don't think you are being dismissed. I think we just forget or never knew the protocol doctors used in treating DVT/PE. For a long time it was 6 months of Warfarin and on your way. RMD and Toss made good points in another post, that most folks get treated 6 months and move on. They never get a repeat scan or much follow up unless they clot again. And most people on here are second clotters or difficult cases, so we are not the norm.
God luck with your planning!

Saw my hematologist today and asked why she recommended against the genetic testing - the answer was that there's no point to opening the door to possible insurance issues in the future when it's not going to change the treatment plan for me. Made sense to me.

I had my PE last year (at age 21). I don't drink, don't smoke, and was relatively healthy before it all happened. I was on very low-dose birth control pills and 19 days later ended up in the ER with two small clots, one in each lung. Because of my family history of not having clots, and my overall health, we factored the birth control to be the cause. My doctor said that I only had to be on Warfarin for 3 months, but I stayed on for a little over 6 just because I felt better about it - he said it wouldn't harm me, so he said it was okay. About three weeks after I came off of Warfarin, I went to have my blood tests done - although my family history showed no signs of having any disorders, it was still just a precautionary measure. My doctor said it wasn't crucial, or really necessary, but I figured that since my insurance covered the tests, and I wanted to have peace of mind, I had the tests done. Everything they tested for came out negative, confirming the birth control to be the culprit. Overall, I guess it's just up to you. I know I wouldn't have had any peace of mind without the tests or the extra months on blood thinners, even though it wasn't necessary.

I had a long well typed response and it just got ate up by windows shutting down my computer. I disagree that genetic testing is not important. There are at least two clotting disorders that require more than just blood thinners to control. One is APS where immunosuppressant's are used to reduce antibody levels in the blood, and the other is MTHFR where folic acid and Vitamin B complex is used to reduce homocysteine levels. Also, some APS patients need to have their INR at a higher level. I'm not saying that is the case in your particular situation, but some people really do need to know what they're dealing with.

That being said there are quite a few posters on this site who have clotted multiple times and they have tested negative for all clotting disorders. These individuals probably have clotting disorders that have not been discovered yet, or they might have an autoimmune clotting disorder like I do but they consistently test negative for all of the antibodies.

Those who test positive for two copies (heterozygous) for the Factor 5 or Factor 2 mutation need to be extra careful when coming off of blood thinners. There is also another combination of clotting disorders that can be very dangerous for patients to come off of blood thinners. That is if you have one copy of the Factor 5 mutation and one copy of the Factor 2 mutation. That makes you pseudo homogenous. These genetic combinations make you way more likely to re-clot than just having just one of these mutations by itself.

You apparently clotted because of the birth control which is a big risk factor for clotting. I think as long as you stay away from the birth control, you will be fine. In the end it is up to you whether or not you get tested for clotting disorders. It is completely normal to want to know why you clotted up. Please do what you think is best for you in your particular situation. I hope you feel better soon!

I meant to say pseudo homozygous. That is when you have one copy of the Factor 5 mutation and one copy of the Factor 2 mutation. Being homozygous or pseudo homozygous for these two mutations is a very rare condition, so is having APS/Hughes Syndrome.

May I ask how long were you on birth control?