# Need info re: clotting disorders



## berkeleyp (Apr 22, 2004)

My daughter was stillborn last May and I did not have a lot of tests done to determine the cause. The perinatologist did not recommend an autopsy and I think the only test I had was a simple blood test, looking for various bacteria. Since then, I have learned that many women suffer stillbirth as a result of clotting disorders. I am expecting again in May and suddenly feel the need to be tested for clotting disorders and anything else I can be to maximise the chances of my new babe's survival. I asked my midwife if she would order these tests and she said that there are far too many disorders to test for all of them and she wouldn't even know where to start or if my insurance would cover it. She suggested that I find out from other moms what disorders are likely to cause stillbirth and also what led doctors to test for these disorders. If anyone has any info about this, I would really appreciate it. Thanks so much.


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## SweetTeach (Oct 5, 2003)

Berkeley, I think you should cross post this in the pregnancy forum to get more responses.

Ones I was tested for were: Lupus and APS and I think another.

Also, the routine bloodwork they did in the beg of your pg might have shown clotting info- I just looked at mine with my m/w.
It seems weird that your m/w didn't seem to know where to start with this--- could you ask the perinatologist?


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## sarah9774 (Feb 19, 2005)

Berkely,

Here is a link where all the women have blood clotting d/o have had losses, and are having babies with treatment. They have been very helpful to me and are very wise about what you should be tested for.. I went to a hemo/onoc office and had a series of test done including all the possible blood clotting d/o, Lupus, and other kinds of tests they took 11 viles of blood to test.. it was very thourogh.. and they found out that I have a clotting d/o.. so here is the site and I will paste the other links one girl sent me. I hope it is helpful!! I know that my insurance covered it due to my Dr. referral and son's still birth.. I think someone told me that out of pocket with no insurance is something like $700.00.. but I dunno.. here is the link

http://groups.yahoo.com/group/FVL-PG

Here are some others I was sent..

http://www-admin.med.uiuc.edu/hematology/PtProthrombin.htm

http://www.nattinfo.org/learn-women.htm

http://search.marchofdimes.com

http://search.marchofdimes.com/cgi-bin/MsmGo.exe?
grab_id=421&page_id=15073280&query=prothrombin+gen e+mutation+pregnancy+loss&hiword=GENEA+GENEBASED+G ENEN+GENES+LOSSES+MUTATED+MUTATIONS+PREGNANCIES+PR EGNANCYS+PREGNANT+gene+loss+mutation+pregnancy+pro thrombin+

http://www.fvleiden.org/publications/midwife.html

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&DB=pubmed

http://www.greenjournal.org/cgi/content/abstract/99/2/333

( I believe this article is part of the links or references section
of this FVL group.)

http://fvleiden.org/

http://fvleiden.org/cgi-bin/search

http://www.bloodjournal.org/cgi/content/full/103/10/3695?
maxtoshow=&HITS=10&hits=10&RESULTFORMAT=1&author1= gris&andorexacttitle=and&andorexacttitleabs=and&an dorexactfulltext=and&searchid=11113790
35714_4753&stored_search=&FIRSTINDEX=0&sortspec=re levance&volume=103&journalcode=bloodjournal

http://www.rbej.com/home/

-- has a `thrombophilia and pregnancy' article - I
can't access right now, but you should be able to sometime in
future. It is from 2003. Author - Michael Kupferminc


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## aswbarry (Jan 31, 2005)

As you know I lost Addie due to a blood clotting disorder. The OB that delivered her was fortunately very cutting edge on blood clotting d/o and their significance in pregnancy loss. She did a full coagulation panel on my blood and recommended that my sisters and mother get tested as well. When I followed up with my hematologist, I had him write down each test they did on me so my family could take it to their MD's. My sister's MD had never even heard of a lot of the tests but it turned out she and my mother both have clotting d/o. Here are the tests they did:

Full coagulation panel including:
Factor V (five) Leiden
MthFR gene mutation with homocysteine
Prothromvin II (two) mutation
Antithromvin III (three) mutation
Protein C activity
Protein S activity
Beta II (two) Glycoprotein
D Dymer

They took about ten vials of blood to test for all of this. Hope this is helpful.

Angela


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## QueenOfTheMeadow (Mar 25, 2005)

I just found out that the baby I lost 3 weeks ago was agirl with no genetic abnormalities. The dr said we could test for clotting disorders. I have had 3 healthy pregnancies and deliveries before this loss. She said that because of this it is probably very slim chance that this was the problem. Has anyone else had healthy pregnancy and deliveries and had a clotting disorder? I am trying to decide whether it is worth having the testing done, ot am I just grabbing at straws? I am not even sure if we are going to try to have another baby. Does it matter when you have the testing done, or does it have to be soon after the loss?


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## aswbarry (Jan 31, 2005)

race_kelly
I am so sorry for your loss. I would recommend that you get tested. I had my daughter Ella two years ago and her pregnancy was healthy/ normal. My daughter Addie's pregnancy was very normal up until she died at 39 weeks. My doctor explained to me that the risks from clotting disorders increase with age so that is why I was able to have a healthy baby and then have a stillbirth. Even if you do not plan to have other children you should still rule it out as a health issue for you because clotting disorders can cause blood clots, stroke, heart disease, and other issues. I know it can seem pretty daunting if your afraid of needles or just overwhelmed with your loss right now but I think it is worth it to know that you are healthy. I know that pregnancy hormones can affect the results of some of the tests so you may want to talk to your MD about the best time to do them.
Take care,
Angela


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## jjoiner (Apr 16, 2005)

I just gave birth to a baby girl in march after being diagnosed with anticardioplipin which is a blood clotting disorder (with the help of heparin). I had a normal and full term pregnancy with my son and then two miscarriages. After the second miscarriages blood work was done by my ob doctor to determine why. I believe it cost us around $300 after insurance paid their part. Like angela said, even if you not planning on another baby, there are other risks.


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## jjoiner (Apr 16, 2005)

Also, If you do have a blood clotting disorder, there are certain medicines you can not take. such as birth control because it is a coagulate (which means it clots your blood). So if there is a chance you have a disorder, it would be worth doing test.


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## whateverdidiwants (Jan 2, 2003)

A Reproductive Endocrinologist diagnosed my APS after 3 losses, and it was then confirmed by a retest 6 weeks later with a hematologist. IME, it's not something that a midwife would have enough training to diagnose by themselves.

Good point from jjoiner about having to avoid certain meds if you have a clotting disorder. I can never take bcps again because they could cause blood clots and kill me - I was *very* lucky that nothing happened when I was on the pill for the 8 years before I started ttc.


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## sarah9774 (Feb 19, 2005)

I too was diagnosed with Prothrombin Factor II mutation which is a clotting d/o after loosing my first son at 40 weeks and 1 day.. It is very important to get tested as the other women have noted here, the risk factors are just too great.. I have only one copy of the mutation and the Dr. told me that he would not feel comfortable seeing me through another pregnancy without the treatment. Better safe than sorry kwim??


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## berkeleyp (Apr 22, 2004)

Just wanted to pop back over here and thank you all for all of your input - it was such a help. I cut and pasted from this thread and sent the list to my midwife and got two full panels done. Everything came back fine.

I do have one Factor V mutation but the hemotologist said that two are necessary for there to be any problems.

I also have just slightly below normal levels of homocysteine but only high levels are a problem.

The hematologist was confident that neither of these abnormalilites could have caused my first loss or present a risk to other pregnancies.

Again - Thank you all!


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## butternut (Jan 3, 2004)

Quote:


Originally Posted by *berkeleyp*
Just wanted to pop back over here and thank you all for all of your input - it was such a help. I cut and pasted from this thread and sent the list to my midwife and got two full panels done. Everything came back fine.

I do have one Factor V mutation but the hemotologist said that two are necessary for there to be any problems.


I am just bumping this as I read this post Berkeley and it does not fit in with what I have read on the various Factor V info sites. According to what I have read, having one gene does put you at a risk for clotting problems.

Anyone else know about this?


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## SweetTeach (Oct 5, 2003)

butternut, you are right. Having one mutation with Factor V is potentially a serious problem (and it is a much higher risk factor if you have a history of pregnancy loss) and that hematologist was dead wrong.

Thank goodness Berkeley's second daughter is just fine







, and I think it would be a really good idea if she follows up with a perinatologist or another specialist for future pregnancies because that hemo's info was just plain wrong. What I have learned about these disorders is that one can have a d/o and have multiple early losses, multiple stillbirths, or a stillbirth here, live birth there, miscarriage there, etc. Not necessarily a rhyme or reason.

I am so thankful that Berkeley posted this thread because I chose to get the full panel of tests (I had only had 3 done when my ds died) and bingo, I came up positive for Factor II...I am now on Lovenox and we know what to look out for with this pregnancy that we had no idea to be aware of with my ds.

butternut, good luck on your search for answers.


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