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Nikkibean
LIF Adolescent
Member since 6/08 647 total posts
Name:
I'm waiting for you to come back to me
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Does anyone else have this disease?
I have a genetic disorder called MTHFR. I've been doing alot of reading on it and it is very confusing.
This is what i kind of figured out.
-my body does not convert a certain enzyme so there is an elevated level of homocysteine in my blood.
-it is a clotting disorder which is the cause for miscarriage. when it comes time to share a blood supply clots get thrown to the fetus killing it.
-it has to do with making folic acid and vit B so if a pregnancy was to stick it has an extremely high risk of neural tube defects.
-it puts me at a high risk for artheriosclorosis, stroke, and heart disease.
If anyone else has this disorder I would love to chat and find out what you know.
Have a good weekend!
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Posted 9/5/09 10:24 AM  |
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Long Island Weddings
Long Island's Largest Bridal Resource |
Donna
1 year already!!
Member since 5/05 3360 total posts
Name:
Donna
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Re: Does anyone else have this disease?
I don't have it, but I know if you do a search you'll find past and present IFers that do.
If I remember I think most of the ladies take lovenox during their pregnancies
Good luck to you!!
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| Posted 9/5/09 10:31 AM |
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lolipep
My prayers have been answered
Member since 10/08 3642 total posts
Name:
Lori
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Re: Does anyone else have this disease?
I have it --2 copies (homozygous) but my homocystein levels are normal.
do you have 1 or 2 copies?
I take extra folic acid-baby aspirin and before I start an IVF cycle I go on Lovenox injections everyday and everyday for the entire pregnancy if I were to get pregnant.
If you want to chat about it FM me
Message edited 9/5/2009 10:43:58 AM.
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| Posted 9/5/09 10:40 AM |
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SecretTTCer
LIF Adult
Member since 6/08 2284 total posts
Name:
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Re: Does anyone else have this disease?
I have it. I don't think it is a big deal as long as you treat it. I am now on two doses of Lovenox, prednisone and extra folic acid. I am 9 weeks preggers and I do have a blood clot in my uterus. Things seem to be under control as the baby is fine. My homocysteine levels are normal.
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| Posted 9/5/09 11:14 AM |
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Diana712
RIP my beloved Brother Richard
Member since 5/07 6710 total posts
Name:
Diana
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Re: Does anyone else have this disease?
I have it.. I was treated during my pregnancy.. lovenox 2x per day + a baby asprin. My dd is perfect. so was my pregnancy! not one problem .. I also had thyroid and n/k cells.. As long as your treated for this you will conceive. Its not a big deal!
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| Posted 9/5/09 11:57 AM |
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JennyPenny
?
Member since 1/08 12702 total posts
Name:
Jen
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Re: Does anyone else have this disease?
I have it and was on extra folic acid, b vitamins and baby aspirin throughout my pregnancy. I had a very healthy baby girl 2 weeks ago.
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| Posted 9/5/09 12:01 PM |
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IrishLasss334
I'll be there soon!
Member since 1/08 6549 total posts
Name:
Patty
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Re: Does anyone else have this disease?
I have MTHFR Factor V. I have to be on baby aspirin for the rest of my life, regardless if I am trying to get pregnant or not.
I am now on Lovenox during my IVF cycle and on Metanx ( extra folic acid and B12/B6).
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| Posted 9/5/09 3:53 PM |
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ricaim
LIF Adult
Member since 8/09 1201 total posts
Name:
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Re: Does anyone else have this disease?
I think you need to know more about YOUR MTHFR. There are different things to consider depending on your specific test results. I am homozygous for the C677T mutation, but I do not have the A1298C mutation. The final piece of information was my homocysteine levels, which turned about to be fine. I will take baby aspirin during pregnancy and am on a higher dose of folic acid. My RE told me never to go on BC again, hence it is not part of my protocol for IVF.
Interestingly enough the Allergist who detected this through bloodwork was very concerned. My current RE was very concerned. Both were concerned for my health and that my family get tested to see if they were at risk, regardless if they were to try to get pregnant or not. My last OBGYN? "Oh, this is one factor in miscarriages, not a cause. DOn't worry about it." GRRR!
Message edited 9/5/2009 5:30:01 PM.
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| Posted 9/5/09 5:28 PM |
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Carolyn
.....
Member since 5/07 5351 total posts
Name:
Twin mommy
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Re: Does anyone else have this disease?
I am homozygous for the C677T mutation. I have no history of m/c and I am almost 25 weeks pregnant with twins with no complications at all. My RE and my high-risk OB were not/are not concerned due to my history I guess. I am only being "treated" with prescription folic acid.
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| Posted 9/6/09 10:04 AM |
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Domino
Always My Miracle
Member since 9/05 9922 total posts
Name:
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Re: Does anyone else have this disease?
I found out I had this after I became pregnant --2 copies. OB did not feel Lovonox was necessary. I am taking baby asprin and extra folic acid. 32 weeks and all is well.
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| Posted 9/6/09 9:08 PM |
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mbawnr
LIF Toddler
Member since 6/07 400 total posts
Name:
Vanessa
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Re: Does anyone else have this disease?
Posted by lolipep
I have it --2 copies (homozygous) but my homocystein levels are normal.
do you have 1 or 2 copies?
I take extra folic acid-baby aspirin and before I start an IVF cycle I go on Lovenox injections everyday and everyday for the entire pregnancy if I were to get pregnant.
If you want to chat about it FM me
Message edited 10/3/2009 1:31:55 PM.
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| Posted 9/7/09 9:23 AM |
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DRMom
Two in Blue
Member since 5/05 20223 total posts
Name:
Melissa
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Re: Does anyone else have this disease?
Posted by lolipep
I have it --2 copies (homozygous) but my homocystein levels are normal.
do you have 1 or 2 copies?
I take extra folic acid-baby aspirin and before I start an IVF cycle I go on Lovenox injections everyday and everyday for the entire pregnancy if I were to get pregnant.
If you want to chat about it FM me
me too and I was on Lovenox and then Heparin for the last few weeks of pregnancy. I delivered healthy twin boys at 35.5 weeks(due to preeclampsia-MTHFR increases your risk of preeclampsia) Everything was fine and the shots are a PITA but worth it in the end. You should take Vitamin E too 2 pills per day.
To the OP-I think you are making it sound worse than it is-those things CAN happen but they may not always
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| Posted 9/7/09 11:36 AM |
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DRMom
Two in Blue
Member since 5/05 20223 total posts
Name:
Melissa
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Re: Does anyone else have this disease?
Posted by ricaim
I think you need to know more about YOUR MTHFR. There are different things to consider depending on your specific test results. I am homozygous for the C677T mutation, but I do not have the A1298C mutation. The final piece of information was my homocysteine levels, which turned about to be fine. I will take baby aspirin during pregnancy and am on a higher dose of folic acid. My RE told me never to go on BC again, hence it is not part of my protocol for IVF.
Interestingly enough the Allergist who detected this through bloodwork was very concerned. My current RE was very concerned. Both were concerned for my health and that my family get tested to see if they were at risk, regardless if they were to try to get pregnant or not. My last OBGYN? "Oh, this is one factor in miscarriages, not a cause. DOn't worry about it." GRRR!
Yes-it does make you more susceptible to stroke. AND it is genetic-I have homozygous C677T which means each of my parents has a copy. Funny thing is my Dad was telling me he had dental work done and the dentist said wow you really don't bleed at all!I also have other clotting diasorders. I should be taking FA and BA but I'm not-have to go get some
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| Posted 9/7/09 11:49 AM |
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Re: Does anyone else have this disease?
I have it too....homozygous C677T I had four miscarriages before they found it out. I am on extra folic acid, baby aspirin and now that I am pregnant (15 weeks) I am taking a Lovenox shot every day. It is not as bad as it seems as long as it is treated. My brother was tested and he was negative for the MTHFR.
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| Posted 9/9/09 12:54 PM |
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