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curiousO
he is here.. thank you God
Member since 10/07 2344 total posts
Name:
Me
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MTHFR
I found out that I tested positive for MTHFR C677T Homozygous gene mutation. 
anyone else has it? I am scared.
what meds are you on?
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Posted 11/4/10 4:12 PM  |
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Daisy21
My Little Loves
Member since 6/10 1133 total posts
Name:
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Re: MTHFR
I have it too - awesome. At that point it was almost like, add it to the list. What else could be wrong with me? I just feel like DH and I were seemingly normal, healthy people and now we have all these things to worry about. I take Metanx, Lovenox, and baby aspirin when I'm cycling. I'm not sure if both the lovenox and metanx are for the MTHFR, but I think the Metanx is. I have two other less significant thrombo issues too.
I know it's not great to hear. I cried, but in the end, it's completely treatable and it's great they found it. Hang in there. If you have any other questions, let me know.
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| Posted 11/4/10 4:26 PM |
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bride07
Ava Rose you are an angel!!!
Member since 3/09 6115 total posts
Name:
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Re: MTHFR
Posted by Daisy21
I have it too - awesome. At that point it was almost like, add it to the list. What else could be wrong with me? I just feel like DH and I were seemingly normal, healthy people and now we have all these things to worry about. I take Metanx, Lovenox, and baby aspirin when I'm cycling. I'm not sure if both the lovenox and metanx are for the MTHFR, but I think the Metanx is. I have two other less significant thrombo issues too.
I know it's not great to hear. I cried, but in the end, it's completely treatable and it's great they found it. Hang in there. If you have any other questions, let me know.
I have to copies of MTHFR too, as well as two other thrombo issues...Similar to what the PP poster wrote. I haev Annexin and Protein S, as well as the two copies of MTHFR. They arent really sure if any of those were the cause of my miscarriages.
I had two miscarriages, then went on to get the testing. I used Baby Aspirin, Metanx, and lovenox through out my 2ww and continues on during pregnancy.
I am almost 34 weeks pregnant. So I am glad I chose to take the medication the Re's suggested.
I know it seem overwhelming now, but it does get much easier. I was in tears for weeks when I found out the news of having to use Lovenox. I was terrified of needles. BUT HONESTLY- I promise it really isnt that bad and I have become a PRO with the injections. Peace of cake now.
Please feel free to FM with any questions.
Message edited 11/4/2010 5:18:39 PM.
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| Posted 11/4/10 5:18 PM |
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curiousO
he is here.. thank you God
Member since 10/07 2344 total posts
Name:
Me
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Re: MTHFR
thank you, ladies. my RE said that I do not require any massive treatment and told me to take baby aspirin and folgard. Nothing about lovenox
can someone tell me more about lovenox? are these pills or injections? did you have to do them while cycling, in 2ww and while prego? are these daily injections?
Is lovenox what they call intralipids?
are there any obvious symptoms of this mutation?
Gosh, i just can not deal with all these issues popping up lately. When will it stop???
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| Posted 11/4/10 5:45 PM |
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ricaim
LIF Adult
Member since 8/09 1201 total posts
Name:
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Re: MTHFR
I also did aspirin and folgard
Edit to add that I was also told I may never go on birth control pill again (if my homocysteine levels were out of wack at any given time the pill could increase risk for heart attack/stroke). So I could not use it again as part of my IVF cycles.
Message edited 11/4/2010 6:33:08 PM.
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| Posted 11/4/10 6:31 PM |
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bride07
Ava Rose you are an angel!!!
Member since 3/09 6115 total posts
Name:
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Re: MTHFR
Posted by curiousO
thank you, ladies. my RE said that I do not require any massive treatment and told me to take baby aspirin and folgard. Nothing about lovenox
can someone tell me more about lovenox? are these pills or injections? did you have to do them while cycling, in 2ww and while prego? are these daily injections?
Is lovenox what they call intralipids?
are there any obvious symptoms of this mutation?
Gosh, i just can not deal with all these issues popping up lately. When will it stop???
Not all Dr's recommend Lovenox.... alot just use BA with Metanx/Folgard. If you had prior losses, then Re's are more aggressive with using Lovenox to be proactive. Lovenox is a blood thinner- it's an injection in the stomach. It's different than Intralipids- which are for Immune Issues and given through an IV.
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| Posted 11/4/10 6:50 PM |
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Daisy21
My Little Loves
Member since 6/10 1133 total posts
Name:
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Re: MTHFR
Posted by curiousO
thank you, ladies. my RE said that I do not require any massive treatment and told me to take baby aspirin and folgard. Nothing about lovenox
can someone tell me more about lovenox? are these pills or injections? did you have to do them while cycling, in 2ww and while prego? are these daily injections?
Is lovenox what they call intralipids?
are there any obvious symptoms of this mutation?
Gosh, i just can not deal with all these issues popping up lately. When will it stop???
Folgard is the same as Metanx. Lovenox is a blood thinner given by pre-filled syringe. Intralipids are different and not used for thrombo issues, but usually for immunity issues and a few other things. They are given intravenously. I have no other symptoms of this mutation. My homosysteine levels are normal, but was told that could change. My doctor did say it might be a good idea to be on a baby aspirin once a day forever. I will be seeing a hematologist or some type of specialist after all of this is over so I feel more informed and know if I need to be on some kind of treatment, but for now I'm following doctor's orders and just trying to get pregnant and stay pregnant. There is a chance you don't need the lovenox because you don't have the other thrombo issues I have. To be honest, and I know this is terrible, I was in such a haze when he was listing all the different things wrong with me, I lost track of which treatment matched which problem. I would ask about the lovenox so you feel a bit better, but hopefully it's not necessary for you. 
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| Posted 11/4/10 6:52 PM |
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DRMom
Two in Blue
Member since 5/05 20223 total posts
Name:
Melissa
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Re: MTHFR
I had it and had a successful pregnancy. Most people have great outcomes when properly treated. I was on Lovenox(prevents clotting of placenta), metanx(provides extra folic acid and B vitamins which people with MTHFR cannot break down properly), baby asprin(thins blood) and vitamin e(Makes blood more slippery to prevent clotting.) HTH
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| Posted 11/4/10 7:21 PM |
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DRMom
Two in Blue
Member since 5/05 20223 total posts
Name:
Melissa
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Re: MTHFR
Posted by Daisy21
Posted by curiousO
thank you, ladies. my RE said that I do not require any massive treatment and told me to take baby aspirin and folgard. Nothing about lovenox
can someone tell me more about lovenox? are these pills or injections? did you have to do them while cycling, in 2ww and while prego? are these daily injections?
Is lovenox what they call intralipids?
are there any obvious symptoms of this mutation?
Gosh, i just can not deal with all these issues popping up lately. When will it stop???
Folgard is the same as Metanx. Lovenox is a blood thinner given by pre-filled syringe. Intralipids are different and not used for thrombo issues, but usually for immunity issues and a few other things. They are given intravenously. I have no other symptoms of this mutation. My homosysteine levels are normal, but was told that could change. My doctor did say it might be a good idea to be on a baby aspirin once a day forever. I will be seeing a hematologist or some type of specialist after all of this is over so I feel more informed and know if I need to be on some kind of treatment, but for now I'm following doctor's orders and just trying to get pregnant and stay pregnant. There is a chance you don't need the lovenox because you don't have the other thrombo issues I have. To be honest, and I know this is terrible, I was in such a haze when he was listing all the different things wrong with me, I lost track of which treatment matched which problem. I would ask about the lovenox so you feel a bit better, but hopefully it's not necessary for you.
Just as an FYI-Folgard is NOT the same as Metanx. They both provide FA and B vitamins but Metanx actually breaks down these since the person with MTHFR cannot do it effectively. Most Dr's are not familiar with Metanx and prescribe Folgard because that is al they know.
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| Posted 11/4/10 7:23 PM |
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FlowerWife
Positive Vibrations...
Member since 1/08 8423 total posts
Name:
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Re: MTHFR
lovenox is a blood thinner that comes in a prefilled syringe. intralipids are completely different, they are a bag of lipids that is dispensed by a nurse via IV. in general lovenox is used to treat thrombo issues while intralipids are used for immune issues. i dont have MTHFR but i do have both thrombo and immune issues. i am on lovenox once a day and i did one round of intralipids prior to ER and i just did another after my BFP. i went for the repeat immune panel today and if all the bloodwork comes back good i wont have to do another intralipids treatment. from what i have heard though i will likely be on lovenox most if not all of the pregnancy.
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| Posted 11/4/10 7:26 PM |
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Daisy21
My Little Loves
Member since 6/10 1133 total posts
Name:
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Re: MTHFR
Posted by DRMom
Posted by Daisy21
Posted by curiousO
thank you, ladies. my RE said that I do not require any massive treatment and told me to take baby aspirin and folgard. Nothing about lovenox
can someone tell me more about lovenox? are these pills or injections? did you have to do them while cycling, in 2ww and while prego? are these daily injections?
Is lovenox what they call intralipids?
are there any obvious symptoms of this mutation?
Gosh, i just can not deal with all these issues popping up lately. When will it stop???
Folgard is the same as Metanx. Lovenox is a blood thinner given by pre-filled syringe. Intralipids are different and not used for thrombo issues, but usually for immunity issues and a few other things. They are given intravenously. I have no other symptoms of this mutation. My homosysteine levels are normal, but was told that could change. My doctor did say it might be a good idea to be on a baby aspirin once a day forever. I will be seeing a hematologist or some type of specialist after all of this is over so I feel more informed and know if I need to be on some kind of treatment, but for now I'm following doctor's orders and just trying to get pregnant and stay pregnant. There is a chance you don't need the lovenox because you don't have the other thrombo issues I have. To be honest, and I know this is terrible, I was in such a haze when he was listing all the different things wrong with me, I lost track of which treatment matched which problem. I would ask about the lovenox so you feel a bit better, but hopefully it's not necessary for you.
Just as an FYI-Folgard is NOT the same as Metanx. They both provide FA and B vitamins but Metanx actually breaks down these since the person with MTHFR cannot do it effectively. Most Dr's are not familiar with Metanx and prescribe Folgard because that is al they know.
Yes, I did a lot of research on this. Actually when I got the script for metanx, I actually got neurpath I think because there was no "dispense as written" on the script. I researched a lot and they are not the same. There is a lot of debate on this topic and I don't like to play with controversial genetic drugs. I went back and got the name brand metanx.
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| Posted 11/4/10 7:32 PM |
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curiousO
he is here.. thank you God
Member since 10/07 2344 total posts
Name:
Me
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Re: MTHFR
this is a great point. RE gave me an rx for folgard, but I got FABB ( i assume generic). I am asking for brand name Metanx on my next apt.
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| Posted 11/4/10 9:02 PM |
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JennyPenny
?
Member since 1/08 12702 total posts
Name:
Jen
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Re: MTHFR
I had it and had a successful pregnancy as well, after it was found and treated. My first pregnancy was a MC and I believe it was contributed to that. I was on Folgard and Baby asprin while pregnant with DD.
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| Posted 11/5/10 11:08 AM |
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classc1
LIF Adolescent
Member since 6/10 805 total posts
Name:
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Re: MTHFR
Posted by curiousO
this is a great point. RE gave me an rx for folgard, but I got FABB ( i assume generic). I am asking for brand name Metanx on my next apt.
I too tested positive for one copy of each mutation and am on daily baby asprin and Folgard...but they gave me FABB. I take two tablets a day...so I get just over 5 grams a day of extra folic acid. I was also told to switch my prenatals to one that breaks down better for those of us with MTHFR. It is called Neevo. I was previously on prescription CitraNatal. Of course...they also filled only the generic of the Neevo.
I think that there are many ladies with your mutation that do take Lovenox daily when they are pregnant..some while in the 2WW. There is a great grouo on babycenter called Lovely Lovenox Ladies that you might want to look into as well as a yahoo group on MTHFR.
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| Posted 11/5/10 1:49 PM |
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