Pulmonary Embolism Support Group

My Doctor told me the other day that the medicine, birth control, and the PE it's self can effect the blood test results. She is going to have me be on the Warfarin for 6 months and then stop and redo my blood test as some of the results can be affected heavily by those things. Each person and the effects PE in each person have a wide verity of issues. I am not sure this information is of any help. I am new to being a PE patient.

I am 47 years old and was diagnosed just shorly before my birthday. Given my health history with estrogen receptor positive breast cancer hormones including birth control pills were not an option for me even before the PE was diagnosed. So this is not an issue for me. I just can't make any sense out of this.

Hi there-

I think I wrote a response to your post in the discussion area. The Factor V Leiden test is often reported as a positive/negative test, but this is not actually accurate. You can be negative, heterozygous or homozygous. People who are homozygous factor V leiden have big clotting problems most of their lives.

People who are heterozygous factor v leiden may never even know it, though their risk for developing clots can be much higher than the general population. Many physicians report heterozygous as "negative," which is not accurate. Please do make sure your daughter is truly negative, and not heterozygous.

As for getting retested, I support that. If you can go to a different physician and lab, that would probably be ideal.

My father and I are both factor v leiden heterozygous. He had a PE two years ago when he was 67. He survived many injuries, broken legs, immobilizations, plane trips to china, spinal surgeries, etc in the years before that without a problem. I had a PE a couple of months ago and I am 37 and in great health with no risk factors (other than the mutation). It doesn't always make sense.

I think it does not hurt to be skeptical, but don't rule out the possibility that the test was accurate. A retest is worth it for peace of mind alone.

Hi. I never had problems throughout my life with various surgeries or the births of any of my 3 children-2 c-section, 1 VBAC where I nearly bled to death. So I don't think that is an issue -it can just happen. I do know that I have 2 clotting disorders now -so it could have been a problem any time in my life. I did have 1 miscarriage. Why things show up at certain times and not others is eyond me. Have you had genetic testing? Do you know for sure ther is not a clotting disorder present? I hope you find the answeres you are looking for. Blessings, Teri

I am FVL Het pos. I do not know from which side it came. The clot that escalated so badly may have come from a sports injury; ran a series of marathons and drove or flew home afterward.

I had done similar things for 25 years with no apparent ill effects. However, a year and a half out I asked them to do the doppler on both legs, not just the bad one. Evidence of chronic small clots was found, so indeed there may have been several small incidents, none of them particularly noticeable, until the big one.

No one among my kin showed trombotic tendencies, but one of my aunts had several miscarriages in addition to one child carried to term.

With FVL, the lifetime odds of getting PE run about 10 per cent. A majority of those who have it do not know it, but once it escalates into a trombotic incident things are not the same again. Those with the heterozygous variety have the best chance of a return to normalcy.

Restest by all means as desired, but it is not unusual to go through a lot of normal things for the better part of a life with no ill effects.