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JamieW
LIF Toddler
Member since 7/05 471 total posts
Name: Jamie
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diagnosed MTHFR
just curious about others that have it.
After my chemical pregnancy...my doc ran a huge panel of tests. I came up positive for MTHFR and some C protein...i think.
I have an appt with a high risk ob/gyn on Feb. 16. Any ideas what we will talk about go over?
I just feel better knowing there is something wrong and now I can move on and fix it!
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Posted 2/1/07 11:15 AM |
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Bklyngrl
luvmyfamily
Member since 9/06 5307 total posts
Name:
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Re: diagnosed MTHFR
i don't know what that is? i hope it all works out
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Posted 2/1/07 11:57 AM |
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Re: diagnosed MTHFR
What is MTHFR??
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Posted 2/1/07 12:45 PM |
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icequeen4700
LIF Adolescent
Member since 5/05 505 total posts
Name: Dawn
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Re: diagnosed MTHFR
i was also diagnosed with MTHFR this past month. Can you tell me which high risk ob you are seeing... none of my drs is making a big deal out of it and I really need another opinion. thanks
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Posted 2/1/07 12:59 PM |
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imyself
Member since 10/06 2938 total posts
Name: me
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Re: diagnosed MTHFR
1) Find out if you are MTHFR homozygous(2genes), compound hetero (2dif genes) or hetero (1 gene). 2) ask for a rx folic acid supplement ie. Foltx. You should be taking 1 pill per defect 3) ask about taking baby asprin 4) have your homosystiene levels checked. 5) ask about Lovenox injections (blood thinner) upon conception or BFP 6) find out from your parents if there is a family history of stroke or clotting problems
This is only for MTHFR I'm sorry but I don't know about protein C. But I know MTHFR is best dealed with by taking preventative measures. If the doctor won't take it seriously find one that will. Good luck
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Posted 2/1/07 2:42 PM |
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katiebell
Hoping, wishing, waiting....
Member since 8/06 1418 total posts
Name: K
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Re: diagnosed MTHFR
What is MTHFR??
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Posted 2/1/07 3:49 PM |
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imyself
Member since 10/06 2938 total posts
Name: me
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Re: diagnosed MTHFR
It is a type of genetic thrombophilia (over clotting of the blood). People with MTHFR can have a folic acid deficency. This can cause the homosysteine levels to raise and the blood to form clots. It can also lead to neuropathy (deterioration of the nerves) siince B12 levels can be effected also. There are a lage amount of people who are Hetero (1 gene) and they usually have no issues. People with compound hetero or homozygous are at a higher risk for strokes among other things. It also increases the risk of early m/c as well as late term loss beacuse the placenta can clott off. Women are usually tested as part of a recurring loss panal, history of clots or if they have a baby with a neuro tube defect. Mthfr has only been Dx'ed the past about 10 years. It has been assoc with clots, stroke, neruo tube defects (ie spina bifida), cleft pallet and fatal losses. Not all doctors believe the research and some feel it is nothing to worry about. But it needs to be taken seriously and when people are Dx'd they need to take extra folic acid, B6 and B12 and possibly a baby asprin for life not just during pregnancy. This info I have gotten from my hemotologist, my ob/gyn or from my MFM. hope this helps and . to everyone
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Posted 2/1/07 4:06 PM |
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DRMom
Two in Blue
Member since 5/05 20223 total posts
Name: Melissa
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Re: diagnosed MTHFR
Posted by imyself
It is a type of genetic thrombophilia (over clotting of the blood). People with MTHFR can have a folic acid deficency. This can cause the homosysteine levels to raise and the blood to form clots. It can also lead to neuropathy (deterioration of the nerves) siince B12 levels can be effected also. There are a lage amount of people who are Hetero (1 gene) and they usually have no issues. People with compound hetero or homozygous are at a higher risk for strokes among other things. It also increases the risk of early m/c as well as late term loss beacuse the placenta can clott off. Women are usually tested as part of a recurring loss panal, history of clots or if they have a baby with a neuro tube defect. Mthfr has only been Dx'ed the past about 10 years. It has been assoc with clots, stroke, neruo tube defects (ie spina bifida), cleft pallet and fatal losses. Not all doctors believe the research and some feel it is nothing to worry about. But it needs to be taken seriously and when people are Dx'd they need to take extra folic acid, B6 and B12 and possibly a baby asprin for life not just during pregnancy. This info I have gotten from my hemotologist, my ob/gyn or from my MFM. hope this helps and . to everyone
Great explanation. I have been diagnosed with the homozygous form of MTHFR. My sister is also and she is currently 33 weeks PG. She has been on Lovenox injections through her pregnancy and has had no issues. You should be on Lovenox from ovulation on in a conception cycle. SIRM does work with this. There is a location in Garden City run by Dr. Braverman and he believes in this protocol. I am also on high dose Folic acid and B vitamins(which you should always take pregnant or not) It is called Metanx and there is another brand called Folgard.
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Posted 2/1/07 4:41 PM |
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JamieW
LIF Toddler
Member since 7/05 471 total posts
Name: Jamie
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Re: diagnosed MTHFR
I just moved to MD from Long Island so my obgyn in here.
I think I have the C677T form of MTHFR. I am trying to do research on it now. My regular doc has been very supportive. He was the one that asked me to see the high risk obgyn to get her opinion on treatment.
He didnt seem overly concerned...he thought the best course would be for me to be on baby asprin.
My question is since I am taking prenatal vitamins arent I already taking an extra dose of folic acid....do I need more than that?
I am actually looking forward to meeting the the new dr to see what she says.
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Posted 2/1/07 6:17 PM |
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happiness
LIF Infant
Member since 8/06 90 total posts
Name:
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Re: diagnosed MTHFR
I have been diagnosed with C677T MTHFR. I just take folgard 2 times a day along with baby aspirin and a prenatal vitamin.
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Posted 2/1/07 9:27 PM |
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DRMom
Two in Blue
Member since 5/05 20223 total posts
Name: Melissa
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Re: diagnosed MTHFR
Posted by JamieW
I just moved to MD from Long Island so my obgyn in here.
I think I have the C677T form of MTHFR. I am trying to do research on it now. My regular doc has been very supportive. He was the one that asked me to see the high risk obgyn to get her opinion on treatment.
He didnt seem overly concerned...he thought the best course would be for me to be on baby asprin.
My question is since I am taking prenatal vitamins arent I already taking an extra dose of folic acid....do I need more than that?
I am actually looking forward to meeting the the new dr to see what she says.
You should be on Folgard or metanx. Extra B Vitamins and extra FA. Like almost 3,000 mcg. You would have to take 5 or 6 regular pills to get that much FA. Ask for the prescription. You could also consider seeing a hematologist.
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Posted 2/2/07 10:11 AM |
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pinkandblue
Our family is complete, maybe
Member since 9/05 32436 total posts
Name: Stephanie
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Re: diagnosed MTHFR
Posted by melijane
Posted by JamieW
I just moved to MD from Long Island so my obgyn in here.
I think I have the C677T form of MTHFR. I am trying to do research on it now. My regular doc has been very supportive. He was the one that asked me to see the high risk obgyn to get her opinion on treatment.
He didnt seem overly concerned...he thought the best course would be for me to be on baby asprin.
My question is since I am taking prenatal vitamins arent I already taking an extra dose of folic acid....do I need more than that?
I am actually looking forward to meeting the the new dr to see what she says.
You should be on Folgard or metanx. Extra B Vitamins and extra FA. Like almost 3,000 mcg. You would have to take 5 or 6 regular pills to get that much FA. Ask for the prescription. You could also consider seeing a hematologist.
I agree with this....I have the homozygous form of MTHFR....I think seeing a hematologist is a good idea, mine ran lots of blood work and prescribed me the lovenox....The thing with folic acid is that you body cannot break it down so the metanx is folic acid in it's broken down form as well as b6 and b12....hth
fm me for more info if you need it
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Posted 2/2/07 10:50 AM |
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imyself
Member since 10/06 2938 total posts
Name: me
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Re: diagnosed MTHFR
My sister is hetero c677t so she only needs folic acid and baby asprin when ttc and when preggo. I am compound hetero so I have to take Foltx twice a day and baby asprin everyday for life. And even if you are only hetero you still need to be monitored. My sister developed a clot with her last pregnancy and required Lovemox. So ladies it is important to make sure your doctor takes MTHFR seriously. SInce the OB/GYN that my sister and I takes it seriously my sister and her baby are perfectly healthy despite multiple clots in the placenta.
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Posted 2/2/07 11:27 AM |
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