Factor V Leiden

My name is Ann and I am 20 years old. I have a cousin that is in his 40's that had a massive heart attack even though he was in good health. When tested, he was positive for Factor V. Afterward, I saw my doc because both of my grandparents died of heart/ blood related illnesses. Not much information was ever given because my grandmother died in the 1940's while pregnant with my aunt and my grandfather also died in the 1950's of heart problems. My uncle passed away when I was very small of heart problems and his son was the one tested positive. My other uncle and aunt (brother and sister) have both had serious heart problems and are still alive. My father has also had problems his whole life and had a double bypass when I was 13. I have had blood pressure problems since I was atleast 8 years old and when I was pregnant with my daughter, I had many problems with my blood pressure and Toxemia. When we were told about my cousin, I wanted to get tested. My OB and my family doc both said that it was rare and that I would probably have to pay so, if they were me they wouldn't because they doubt that is could be something so rare. It was thought that my cousin contracted it from his mother's side. Today I found out that my older brother tested positive for it. I just wanted to know if I should get tested and how do I go about it. Also, if my brother has it, does my father???? and if I do, should my 2 year old be tested??? Please let me know anything you can. Thanx

There are plusses and minuses to being tested and it is controversial as to who should be tested. If your brother is positive then there is a small chance that you are positive also. We usually recommend testing of family members if a first degree relative, such as sibling, child, or parent is positive. However, if you have never had a blood clot, blood pressure problems are NOT the same, then there would be no difference in your care with the exception of close monitoring during pregnancy and avoidance of hormones. It would however, be a stigma on your insurance including the ability to obtain life insurance and also health insurance coverage. Since other agents such as hormones, smoking, pregnancy, and surgery may increase the risk of clots, these should be treated carefully. The risk of blood clots increases as you age, therefore in future years, we may have more information on who should be treated and also your risk of clots may be increased, therefore recommendations to screening will change. At present, this is a sticky matter with no good answer so I would recommend that you research it carefully and make a decision for yourself. The screening test, apc-r should cost about $50 so even if insurance does not cover it, it is not prohibitively expensive.

My wife is 14 weeks pregnant. She asked our ob/gyn for a Factor V test
because she knows her mom has a history of blood clots. The test came back
positive for the Factor V Leiden mutation. The ob/gyn referred us to a
specalist and the specialist wants to start her on heparin ASAP. We had a
second opinion with another specialist and he said to simply take aspirin.
What should we do? My wife's test indicated she is heterozygote only and
she has had no issues of blood clotting, even though her mom has. Is there
any more treatment options for expectant mothers besides heparin or lovenox
shots or aspirin?

Thank you very much.

There was a recent study published looking at women with recurrent missed abortions with known thrombophilia diagnosed. In these women, who included women with fv leiden, the addition of lovenox at 40 mg daily throughout their pregnancy increased the likelihood of a healthy delivery. The problem here is that your wife according to your letter has had NO problems and therefore, whether she would do fine without any treatment is not known as we usually would not evaluate someone like her without evidence of thrombus or missed abortion.

Lovenox, low molecular weight heparin, while it may slightly increase the risk of minor bleeding, has demonstrated safety in women who are pregnant who have used it. There are no other proven methods for treatment other than lovenox.

My daughter age 45 was diagnosed with Factor V Leiden while pregnant with her son who is now eight years old. Six years ago her father had a stroke and also has the factor. Our son who is 42 and I do not have the condition. Has there ever been any research done to show corrilation between fathers passing the condition on to daughters more often then sons? How long has the medical community known about this condition and are women who are pregnant automatically tested for it? Would appreciate any information. Thanks

Factor V Leiden is not a sex linked inherited trait. It may be passed down by both the mother or the father, or both. There is a 50% chance that an affected person will pass this trait down to each offspring. It does not matter if the child is a boy or a girl. If one gene is inherited the patient has a mild disorder, however if both parents pass down one gene and therefore two genes are inherited, the disorder is much more severe.

This disorder has been identified in the mid 1990's and has initiated much research into identifying other similare disorders. It is not recommended to test all pregnant persons or even all persons before starting hormone supplementation because it is NOT cost effective. Only persons with a personal or family history of blood clots or missed abortions are currently tested.

FACTOR V LEIDEN, TIA, AND USE OF WARFARIN OR OTHER AGENTS

I had a TIA, I'm 33 years old. I tested positive for factor V leiden. I
was put on wafarin and with only two pills 2 mg each per day, I started
bleeding (nose bleeds and fresh blood vaginally) which lasted for 8
days. When I went to family Doc they did lab work and I abnormally bled.
I think definitely that wafarin is too strong for me. Do people ever
just take asprin for this disease? I would appreciate any info. Thank

You. Lauri

There is little information as to the optimum treatment of TIA in patients with f V Leiden. Much experience exists with deep vein thrombosis and the basis for warfarin therapy is based upon studies looking at venous clot which is quite different than your problem. It would be helpful to know if you inherited one or two genes for the f V Leiden as the risk changes. Assuming you inherited one gene, you are at lower risk and long term anticoagulation with warfarin, lifelong, is not indicated. However, there are few studies with this disorder and TIA. Most patients with TIA, stroke, and heart disease do better with agents that affect platelets such as Aspirin or Clopidogrel. This may be an option for you with close monitoring. If recurrence occurs, than warfarin may be needed. It is unusual to bleed from warfarin unless there is an underlying defect from which you bleed from or the level is markedly elevated. If warfarin is to be used, than close monitoring of the PT/INR will ensure safety in your case. We would recommend initial monitoring twice weekly until you are within range, and then once weekly until you are stable for a period of time. We have never been UNABLE to continue any patient, despite age, riske, etc. on warfarin due to bleeding. Therefore, I would not assume this is your system, but may be related to concurrent issues such as other medication,
monitoring of your blood, diet, etc.

I am 21 years old and have been on Warfarin for over a year now. My dosage is 5mg 6 days a week and 7.5mg one day a week. It changes every once in a while and is very frustrating. I had a blood clot in my calf which lead to many blood tests. The doctors had told me that I have ACA and Factor V Liden deficiency. Neither one of my parents have been tested, so I have no idea if one or both my parents have the same thing as me. My sister was also tested and she has only a 20% chance of blood clots and is not on any medication. I would like to know if there is anything that I can do to get off my Warfarin. I would appreciate if you could give me any advice. Thank you very much.

Taryn

Persons with at least one blood clot and the ACA are at exceptionally high risk of recurrent blood clots therefore, the current recommendation is for long term treatment with warfarin to prevent additional potentially life threatening blood clots. The F V Leiden carries lower risk and does not mandate life long treatment (see clotting disorders pages) I would agree with the current treatment as the risk is too great.

I am so glad that I found your site. I see that you are working on a page

for this topic, however, I thought I would see if you could send me some

info.

I am 23 yrs old and I tested positive for Factor IV Leiden (one gene)about 4

yrs ago (my Grandmother has 2 genes). I am now on long-term Coumadin

therapy. My husband and I are wanting to have a baby soon and we are

concerned about being on Lovenox. Will it harm the baby? I have so many

questions... We have an appt w/ my Hematologist for the end of June, but I

was hoping to do a little research before then as that is the time we are

looking at to start trying. My doctor thinks that it is best that I be on

the Lovenox. Could you send me any info to ease my worrying?

Thank you for your help

Ashley

Thank you for logging onto our web site.

First, if you have not had a blood clot and have the Factor V Leiden, there is no indication for coumadin. If you have had a blood clot and have one gene, heterozygote, then lifelong coumadin is not warranted as the risk of an additional clot, while greater than in the general population, is not high enough to warrant long term anticoagulation therapy. If you have had more than one clot, have an additional abnormality that predisposes you to clots, or have inherited both genes, homozygote, then long term anticoagulant therapy is indicated. Please see the page on Factor V Leiden.

In terms of pregnancy, many patients have been treated with long term lovenox with no ill affects on either the mother or the baby. However, depending upon your inherited defect, Lovenox during pregnancy may not be mandated. Some researchers believe it is not necessary. However, it will not harm you or the baby if used with care. I would recommend that you not only speak with a hematologist knowledgable in clotting disorders, not just an oncologist, but also a high risk obstetrician who will have had much experience with this as it is a very common abnormality.

Best of luck to you.
Please let us know how things work out.

Dear Doctor,
I have a one Year old who has had Two Heart operations and has
to have one more. My oldest son who will be three does not have
heart Problems. I am adopted and I just found out about the Hyper
Coagulation syndrome, Factor five Lieden, and an other one.

The decision on when best to test family members of if to test family members is a controversial one. We know that the likelihood of blood clots ocurring increases with increasing age. Also, children rarely require medical intervention or are placed on medications that increase the risk of blood clots. The diagnosis may potentially increase insurance premiums and therefore cause problems later in life. Therefore, this is one issue that needs to be individualize based upon the condition of the child. If recurrent surgeries are planned, your physician must know about the family history. He can best help you decide when testing will be appropriate.

Send mail to rshtcn@aol.com with questions or comments about this web site. Last modified: March 02, 2008

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Last modified: March 02, 2008