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Old Feb 23rd, 2013, 00:41 AM   1
OrthoChick
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Factor V Leiden and MTHFR Mutations?


Hey all,

First post here...looks like I may be switching over to the forums where people are less worried about their "faint positive" pregnancy tests, and more concerned with complications of TTC. Just diagnosed with Factor V Leiden (heterozygous) and MTHFR (homozygous) mutations, as well as low progesterone and low AMH. Setting up an appt with the hematologist next week to find out next steps, as my OB (understandably) doesn't want to touch me until we find out if I need to be on blood thinners, etc.

The question: does anyone else on here have these mutations? what were your experiences going forward with TTC? It is worrying that I will be a "high risk" pregnancy no matter what (my fantasy of a home birth just got thrown out the window, lol).

Any insight/info/thoughts are much appreciated!



 
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Old Feb 23rd, 2013, 10:24 AM   2
oneof14
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I have factor V leiden. My 1st 2 IVF's I was given lovenox (blood thinner) after my transfer. Since then I've switched clinics and went to a hemotologist who does not recommend the lovenox after the transfer, but I will be taking baby aspirin.

Not sure about MTHER, I've read on another that after testing positive for this, they increased her frolic acid after transfer.



 
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Old Feb 23rd, 2013, 11:24 AM   3
OrthoChick
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thanks, oneof14 Yeah, the MTHFR thing sounds kind of irritating...it depends on which mutations you have, so for some they need increased folic acid, others need folate, etc. We'll see what the Heme guy says about me having two clotting factors. What was your doc's reason for switching to baby aspirin?

Good luck on your next IVF...coming up soon! I'll be sending good thoughts your way



 
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Old Feb 23rd, 2013, 12:10 PM   4
kiki04
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I dont even know what any of that means but just wanted to give you a hug because it sounds like quite a struggle!



 
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Old Feb 23rd, 2013, 23:05 PM   5
SweetMel
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Hello OrthoChick. I have a clotting disorder, but my doctor hasnít put any other name on it except for thrombophilia. I think it is the same thing as Factor V Leiden. I had four mc before my two boys were born. My doctor put me on a lot of vitamins and supplements: vitamin A, B Complex, Folic Acid, C, D3, Calcium, Fish Oil, Zinc, Selenium, Chromium, and baby aspirin. I know also that eating a diet low in carbs helps too. I have recently come to the conclusion that the reason low carbs helps ďcureĒ me has something to do with a wheat allergy, but Iím not exactly Celiac.

This may sound like a strange question, but do you experience a lot of clots during AF? I used to pass a lot of clots, and some of them would be quite large. Try taking the full range of B vitamins and make sure that you take extra folic acid. I take a multi that has 400mcg and also 3x800mcg extra.



 
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Old Feb 23rd, 2013, 23:50 PM   6
OrthoChick
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Quote:
Originally Posted by SweetMel View Post
Hello OrthoChick. I have a clotting disorder, but my doctor hasnít put any other name on it except for thrombophilia. I think it is the same thing as Factor V Leiden. I had four mc before my two boys were born. My doctor put me on a lot of vitamins and supplements: vitamin A, B Complex, Folic Acid, C, D3, Calcium, Fish Oil, Zinc, Selenium, Chromium, and baby aspirin. I know also that eating a diet low in carbs helps too. I have recently come to the conclusion that the reason low carbs helps ďcureĒ me has something to do with a wheat allergy, but Iím not exactly Celiac.

This may sound like a strange question, but do you experience a lot of clots during AF? I used to pass a lot of clots, and some of them would be quite large. Try taking the full range of B vitamins and make sure that you take extra folic acid. I take a multi that has 400mcg and also 3x800mcg extra.
Hey there, SweetMel!
Glad to hear that you had two happy bouncing boys after going through this; helps me stay positive! As far as the AF thing...hard to say b/c I also have low progesterone, which may be ganging up on my cycles with the clotting factors to make them very light. I will say that whenever I do see anything pass, it is very clotted and sticky. Not usually any new blood, all very old and gummy (gross???!!!). I also used to get nosebleeds when I was young, and I would definitely sneeze out huge blood clots (freaky).



 
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Old Feb 24th, 2013, 01:03 AM   7
SweetMel
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Thank you. Getting my healthy happy bouncing baby boys was a lot of hard work. I had to be on just the right amount of thyroid medication. I had to overcome PCOS through diet, exercise and vitamins. I lost the four mc due to the combination of all three problems. I am doing a bit of research currently that makes a link between Celiac disease (gluten intolerance) and thyroid disease, PCOS, and blood clotting. I never would have guessed that I have gluten intolerance because I donít suffer from very many of the symptoms but the connections between the diseases canít be that coincidental. All I know is that I can eat a very low carb diet and get pregnant. My new husband and I have been ttc since we got married in July of 2011 (NTNP) but I havenít been low carb that long (only about 6 weeks). Iím hoping that within 6 months all of these things will clear up. What supplements did the doctor what you to take?



 
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Old Feb 24th, 2013, 01:09 AM   8
OrthoChick
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my OB doesn't want to have an appt to go over supplements until I have a work-up done by a hematologist to assess if/what type of blood thinners I need to be on. One step at a time! Definitely chomping at the bit to get this all sorted.



 
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Old Feb 24th, 2013, 01:19 AM   9
SweetMel
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Yes. I would be too. But it never hurts to drink more water. I think that helps to keep the blood thinner. I try not to drink things that cause dehydration like soda, tea, and coffee. I am currently taking a 81mg baby aspirin, but you should make sure it is okay with your doctor first. I also think the Fish oil helps my blood and it may contain a bit of Vitamin E, but I'm not sure.



 
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Old Feb 26th, 2013, 00:17 AM   10
familygirl30
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Hi,I have factor v Leiden and found this out after getting a blood clot 4 years ago,I was always told that soon as I found I wa s pregnant I needed to start on blood thining injections.I have been on them since I was 5 week pregnant and due to see my heamotologist tomorrow.



 
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