18 Replies
angelswim - May 26

I was wondering if anyone else was diagnosed with this blood disorder.


lexa - May 26

I was diagnosed with the Factor V Leiden mutation. (blood disorder along the same lines with MTHFR) What are they doing for you? They found the blood disorder in me last year (well before my pregnancy). I was only tested b/c my dad had a ma__sive stroke in which he almost died! My pcp tested me for everything under the sun and found that my Ant_thrombin III was extremely low (along the lines of these other DNA mutations). i was put on baby aspirin everyday for "life". Now that I am pg, my OB re-ran all of the tests and found my Anithrombin III still low, but he tested further and found the factor V. I am babk on baby aspirin and folic acid everyday now. I am not considered a high risk pg at this point and they will re-run again a little later to see if I may need heparin injections during delivery. I am so sorry that I really went into all of this. If you have this, you are not alone! They say it affects more people than we think. Funny thing is that I had this with my son when he was born (8 1/2 years ago), but it was never diagnosed or even looked for, so thank god all worked out well back then. please let me know.


tryingx3 - May 29

After 2 miscarriages, I was tested for several things and the MTHFR came back showing a single mutation. They also check for elevated homocysteine levels - which might indicate risk of blood clots. Mine were normal. HOWEVER, they did want me to take extra folic acid and I was told that MTHFR is related to strokes and to continue to take 1 mg of folic acid the rest of my life. Right now, I am 23 weeks and take my regular prenatal and then an additional 3 mg of foilc acid a day. I am also on one baby aspirin a day until week 36. All under doctors care/orders.


lexa - May 29

tryingx3, mine is the single mutation also. The reason they found all of mine was due to my dad having a ma__sive stroke 2 years ago. That's when my pcp found the Ant_thrombin, but when I ended up pg, my ob tested further to find the rest. I was on baby aspirin before getting pg, but my ob put me back on. Like you, I am on 4mg folic acid and a baby aspirin for life. yuck


tryingx3 - May 29

Lexa are you to take an additional 4mg folic after pg too? My doc only said 1 mg folic. Said to tell my siblings too...however, they are stubborn and don't listen. My grandmother (mom's side) had a stroke and I have an aunt who had to be treated for aneurysms. I can't convince Mom to take extra folic acid either! Do you know of any side effects of extra folic acid?


lexa - May 29

My ob said the extra folic acid only while I'm pg. I'm not really sure on the side effects from too much. I actually never asked. My sister is in the midst of being tested now for everything as well. They found her bloodwork to be abnormal, but didn't tell her exactly what yet. She goes back on Weds. This is all from my father. My grandmother (his mom) has had mini strokes and heart attacks. She has a pacemaker now. My dad's sister pa__sed away when I was 8 of MS (which I guess has been found to somehow be contributed to this also, but never tested for way back then) So they do have health issues that stem from this. Problem is that it never would have been found in any of us if my dad didn't have the stroke. They were testing to find out why he did and found all of this. He just turned 49 when he had it. I do know from reading though that they say if you take too much folic acid it can somehow alter your vitamin b12 (which can mess with the nerve system) But if you take recommended doses, should be fine. I am wondering however if my pcp will keep me on the folic acid after I deliver (they haven't sent him my results yet...which ticks him off). I have a question, are you planning on b___stfeeding at all and if you are, have you looked into it? Just curious. I have to consult with a specialist to see if I can. That bums me out. My ob said I will have to stop the aspirin and take a prescription to b___st feed. Then after b___stfeeding, stop the prescription and go back to baby aspirin. I have to call a specialist tomorrow to see. And I'm not sure why they told me 4mg of folic acid. The nurse-midwife at the office told me that after 12 weeks of taking it, the body is somewhat used to it so it doesn't make a difference. Wether or not that is true, I don't know (I will keep taking it rather that ask the ob doc and get her in trouble for saying that).


tryingx3 - May 30

First - I am so sorry about your dad. Believe it or not, I was on the couch last night and recalled your message and thought how hard that must have been for you and your family and how rude of me not to say something!! ~~~ Yes, I am planning on b___stfeeding. Nothing has been mentioned to me related to the MTHFR factor and b___stfeeding. I also had only planned on taking the baby aspirin during my pg. My high-risk ob didn't mention me taking if after 36 weeks...only an additional 1mg of folic acid for possible stroke prevention. I wonder what kind of prescription you would need to be on? I am on medication for Graves Disease (thyroid disease), but it is considered safe for b___stfeeding as long as the baby's thyroid levels are monitored and okay. Unfortunately, it does pa__s in the b___stmilk.


lexa - May 30

oh tryingx3, thank you so much for your kind words! you didn't have to say anything, it's okay. I am also sorry to hear about your grandmother and aunt! That's good that you don't have to take the aspirin after the baby too. My ob said for my pg, but since I was on it before from my pcp for my bloodwork, my pcp would put me right back on it anyways! I know that some blood problems are more of a concern during pregnancy. But the combination I have is a concern to my doctor without pregnancy (the Ant_thrombin III) The Factor V that I have is more pregnancy related.I can't remember the name of the prescription (I know it began with an L and Lexapro sounds familiar, but I pray to god that's not it!) I was supposed to call today, but it's been so hectic, that I have to do it tomorrow morning. I'll find out from the specialist and let you know. On the flip side of things, they said they aren't going to consider me high risk at this point, but are monitoring closely and will rerun the bloodwork later. I remember how my dad's Injection site looked after heparin injections, and I don't want them! (very large and black and blue also, very sore and would bleed for a while afterwards) How is your grandmother and your aunt? Did your grandmother have a bad stroke or any paralysis? It's tough! It seems like the older we get, the more we are encountering health problems all around us. Remember like 15 years ago? No worries in the world. Just thinking, "oh god, 3 more years of high shcool left...I hope I make it". Now I feel like I went to "oh god, all these blood tests, I hope I'll be okay and still be healthy in 3 years". Hope you are doing well! Talk to you soon.


tryingx3 - May 31

My grandmother had type II diabetes and other complications, pa__sed away with ma__sive stroke. My aunt had to have surgery to repair aneurysms and had some complications, no longer able to work or drive, but I believe is doing okay for the most part. Yes, I think with the Factor V, they want to make sure your blood is not clotting too fast and that there is good flow to the baby...BUT what do I know! :-) Specialists did discuss putting me on heparin shots, but past miscarriages did not warrant it yet. If something were to happen this time (please no)...then they probably will...however, there is really no blood factor indicating that I need it at this time, taking baby aspirin as a precaution. My first m/c was a partial molar and the 2nd was caused by extra 15 chromosome.


tryingx3 - May 31

I am thinking Lovenox is the "L" medication name you were trying to remember. It finally came to me, it is a heparin type medication. Lexapro is for depression/anxiety, etc...which we might need if we continue to worry too much! :-)


Baby - June 1

hi i have this I am homozygouse for it I take 4mg of folic acid a day and I am supose to be taking a baby asperin but I dont ushally


lexa - June 1

You got it's Lovenox. I keep forgetting it! I knew it began with an L...and something:-) Oh jeez, I guess I do need the other L word medication too, huh? It is the mild form of heparing (via injection), that's why I said "I prayed to god it wasn't that". Still didn't get to call yet...ugh! I have so much going on right now that a "simple" 10 minute phone call is a little much to try to fit into. Welcome Baby! Why don't you take your folic acid and baby aspirin? Did you find out due to you being pregnant? We'll be fine ladies!


tryingx3 - June 2

Also - where is angelswim who started this? :-)


miffitt - June 30

There is another thred on this same discussion...t_tled "MTHFR?" It has had a lot of posts and it might help to look there, too. I also have MTHFR and I found you guys because I was trying to find out more about Ant_thrombin 3 activity level being low. My doctor stated that this could have caused my placenta to clot and could have been the cause of my last three miscarriages. My doctor will be having me take a few more test, but she has stated that she thinks that she would like for me to see a Specialist initially and then i could come back to her for middle of preg and delivery. I too am very afraid that I will have to take shots!!! I am the biggest baby when it comes to having my blood taken, which has unfortunately happened a lot this past year. I have read from some other ladies that if you put ice on the injection site immediatly following the shot it can help. I too am trying to get my family tested too. They say Yes I should do that, but they haven't! Best of luck to you guys. : )


yetanothertripletmom - June 30

I don't have MTHFR but, after 3 m/c I was diagnosed with another bloodclotting disorder (elevated LPA). My last pregnancy I took heparin shots twice a day and baby aspirin. This pregnancy I'm on lovenox shots and the BA again. The shots are no fun, but the baby's worth it!


lexa - June 30

Well, I guess so far so good. I was just "retested" (I thought it would have been done later, but oh well), and I guess I will find out my results this upcoming Thursday at my appointment. The lactations specialist said b___stfeeding is no problem and I can stay on the baby aspirin while doing so. Yeay! One hurdle crossed. Hopefully blood tests come back ok. Who knew that there were so many bloodclotting disorders out there and how bad they affect people. It's a shame. I do agree though that the baby's are worth it:-) Bad thing is, I didn't find out how bad things were until we found out I was pregnant and they ran more blood tests to check more extensively. I just thank god everyday now that all went as well as it did with my first!


-NINA- - November 22

I know this thread is old, but I would really like to contact LEXA because I have just lost my daughter at 21 weeks and I have been diagnosed with Ant_thrombin Deficiency and I am terrified of another pregnancy. Please if anyone can help me I would really appreciate it. Thanks, Nina



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