Factor V Leiden and MTHFR Mutations?

[OrthoChick]

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!

 

[oneof14]

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.

 

[OrthoChick]

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

 

[kiki04]

I dont even know what any of that means but just wanted to give you a hug because it sounds like quite a struggle!

 

[SweetMel]

Hello OrthoChick. I have a clotting disorder, but my doctor hasn’t 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 “cure” me has something to do with a wheat allergy, but I’m 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.

 

[OrthoChick]

Hello OrthoChick. I have a clotting disorder, but my doctor hasn’t 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 “cure” me has something to do with a wheat allergy, but I’m 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).

 

[SweetMel]

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 don’t suffer from very many of the symptoms but the connections between the diseases can’t 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 haven’t been low carb that long (only about 6 weeks). I’m hoping that within 6 months all of these things will clear up. What supplements did the doctor what you to take?

 

[OrthoChick]

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.

 

[SweetMel]

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.

 

[familygirl30]

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.

 

[angelria]

I have MTHFR A1298C two copies. I had my son almost 3 years ago with no complications and never knew I had the blood clotting disorder. We have been trying for #2 for 2 years now and after 3 mc they did a full blood workup and found the MTHFR. They believe that is the reason for the mc as they have done every other test possible with negative results. They have me taking Folgard and a baby aspirin daily along with a prenatal vitamin. Good luck to you and I hope they get some answers for you soon and get you on some type of treatment plan. It can be very stressful and discouraging at times, but just hang in there.

 

[Sdias]

Hello,
I'm new in the forum and the main reason for me to join is because I also have factor v Leiden and another mutation called prothrombin 20210. I'm trying for a baby for the first time and I want to know more stories as I'm not from England so I'm not sure how things work here.
First of all let me tell you that my sister has the same mutations as me and she had a very healthy baby 5 months ago. She also took lovenox since she found out she was pregnant until a few weeks after giving birth. She was seen by the doctor every month to make sure everything was ok with her and the baby and everything went very well.
I've know about my problem for a long time and for the first time I'm feeling a bit anxious about it. I have spoken to my gp and he told me that when I get pregnant he will send me to the hospital to be seen by a specialist and that made me feel much better already.
Does anyone know how does it work with the injections?
How much do they cost?
Sandra x

 

[SweetMel]

I don't think I ever took lovenox. I hope someone else can answer your question.

 

[Storked]

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!

Hello, I have heterozygous FVL mutation. It runs in my family actually (with serious complications). I think having FVL alone wouldn't ever warrant lovenox from any of my doctors but I have had 2 sisters almost die from complications. I give myself lovenox injections daily as soon as I get a BFP. But when I was TTC I didn't take anything. I used to go with baby aspirin but it just made my periods a mess.
I am so sorry about your dream of a home birth being crushed. I understand.

What did your hematologist say? What steps do they want you to take? Good luck

 

[OrthoChick]

What did your hematologist say? What steps do they want you to take? Good luck[/QUOTE]

Ha! The best part, is that the hematologist wants nothing to do with me. He came in in his sweet little sweater vest and said that he has never seen this combination of issues in someone my age leading to CP, and that there is no known protocol for it. Yikes! We saw a really great urologist in San Francisco for David's issues last week, and they referred me to a Reproductive Endocrinologist to get checked out. I will go tomorrow and see what he says! Despite it all, I put myself on baby aspirin, my normal prenatal, and a bioabsorbable form of folic acid (methyl folate), because I am 8dpo...on the off-chance we got lucky, I don't want to feel like I could have done more!

TTC is balls-out ridiculous sometimes

 

[SweetMel]

Ortho, I hope you have better luck with the new doctor. It sounds like you are taking all of the right suppliments. Have you tried eliminating grains from your diet? I don't know if it is the end all cure all but it is worth a try.

 

[Storked]

What did your hematologist say? What steps do they want you to take? Good luck

Ha! The best part, is that the hematologist wants nothing to do with me. He came in in his sweet little sweater vest and said that he has never seen this combination of issues in someone my age leading to CP, and that there is no known protocol for it. Yikes! We saw a really great urologist in San Francisco for David's issues last week, and they referred me to a Reproductive Endocrinologist to get checked out. I will go tomorrow and see what he says! Despite it all, I put myself on baby aspirin, my normal prenatal, and a bioabsorbable form of folic acid (methyl folate), because I am 8dpo...on the off-chance we got lucky, I don't want to feel like I could have done more!

TTC is balls-out ridiculous sometimes [/QUOTE]

I think that what you are doing is great
Update us on what the RE says!