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MTHFR

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MTHFR

Postby ellemoon » Wed Sep 19, 2012 07:43 am

by ellemoon (47 Posts), Wed Sep 19, 2012 07:43 am

So, I got my blood work back. All of it was fine except my B-12 was low and C-reactive protein was high. The MTHFR showed two gene mutations: C677T/C677T

Do any of you know anything about this? It said I would need to be on Folgard. Do you know what dosage? What about Lovenox during my next pregnancy? Any insight anyone has on this would be greatly appreciated!
Leslie (26) DH (28)
Chronic hypertensive since age 17
DD- born April 24, 2011 due to severe pre-e at 29w1d weighing 2lbs, 11oz
Diagnosed with homozygous MTHFR C677T
Pregnant with #2! Due 9/2/13 but will deliver at 36-37 weeks due to classical csection.
(Labetolol, HCTZ, Aspirin 81mg, Calcium, Mag, Zinc, D, Fish Oil, Fiber gummies, Folic Acid)
ellemoon
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Re: MTHFR

Postby sam10 » Wed Sep 19, 2012 10:04 am

by sam10 (1436 Posts), Wed Sep 19, 2012 10:04 am

I have MTHFR, and I believe I am compound heterozygous (one copy of each), but I will check my notes when I am back home. I am taking 1mg of Folic Acid, and Vit.B6 and Vit. B12, during pregnancy and outside of pregnancy. The important part is to check your homocysteine levels. Mine are normal (not elevated). Elevated homocysteine levels are believed to contribute to the hardening of the arterial walls (arteriosclerosis) and blood clots, but even this is not well funded by research. YOu can read more about that here: http://circ.ahajournals.org/content/111/19/e289.full

I am not taking Lovenox during this pregnancy, and it is my understanding that the reason is that my homocysteine levels are normal. Check this link for all blood clotting disorders: http://www.stoptheclot.org/learn_more/glossary.htm

"MTHFR… Stands for Methylene-Tetra-Hydro-Folate-Reductase. Some individuals with the homozygous MTHFR mutation have elevated homocysteine levels. Elevated homocysteine levels are a risk factor for blood clots. The individuals with MTHFR mutations who have normal homocysteine levels are not at increased risk for clots. Thus, the MTHFR mutation by itself is not a clotting disorder"
~Julija (40)
MC 3/2009 and 3/2011
Henry (1/1/2010-1/7/2010) - forever loved and missed; severe PE with Hellp; partial placental abruption, classical c-section at 25.6 weeks
Matilda (Nov. 2012, born at 35.4 weeks) - severe PE


Our pain has been put into words, placed into empty cradles, to remember that all our babies lived, that they mattered and always will. - Field of Cradles http://www.fieldofcradles.org/
sam10
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Re: MTHFR

Postby ellemoon » Wed Sep 19, 2012 12:52 am

by ellemoon (47 Posts), Wed Sep 19, 2012 12:52 am

Thanks for you input! They are going to check my homeocystine levels today. This is all so confusing! I've been doing a lot of research and from what I can tell, a lot of doctors don't even agknowledge the mutation and then others do. I guess it all depends on the doctor. For me, I feel like the potential benefits of starting anticoagulation therapy with pregnancy outweigh the potential risks. I would feel ALOT more comfortable if they chose to put me on Lovenox. I guess we will see.
Leslie (26) DH (28)
Chronic hypertensive since age 17
DD- born April 24, 2011 due to severe pre-e at 29w1d weighing 2lbs, 11oz
Diagnosed with homozygous MTHFR C677T
Pregnant with #2! Due 9/2/13 but will deliver at 36-37 weeks due to classical csection.
(Labetolol, HCTZ, Aspirin 81mg, Calcium, Mag, Zinc, D, Fish Oil, Fiber gummies, Folic Acid)
ellemoon
Registered User
 
Posts: 47
Joined: Thu May 17, 2012 02:14 pm

Re: MTHFR

Postby sam10 » Wed Sep 19, 2012 02:39 pm

by sam10 (1436 Posts), Wed Sep 19, 2012 02:39 pm

MTHFR seems to be a complicated "disease", as there seem to exist a lot of differing opinions in the medical field. I have come across somewhere that it is not considered a clotting disorder any longer, but I could not find this information anymore.
I'd wait and see what your homocysteine levels are and then have a thorough discussion with your MFM how this would affect your care in a subsequent pregnancy.

When I discussed this with my MFM he told me that lovenox/heparin is a "serious" drug that he does not prescribe lightly and only if necessary. He felt that in my case (normal homocysteine levels) it was not needed and it would do more harm than good. As I have mentioned before, I am taking Folic Acid and a VitB complex.

If you have more questions, let me know and I will try to answer as best as I can.

Let me know when you get your results.
~Julija (40)
MC 3/2009 and 3/2011
Henry (1/1/2010-1/7/2010) - forever loved and missed; severe PE with Hellp; partial placental abruption, classical c-section at 25.6 weeks
Matilda (Nov. 2012, born at 35.4 weeks) - severe PE


Our pain has been put into words, placed into empty cradles, to remember that all our babies lived, that they mattered and always will. - Field of Cradles http://www.fieldofcradles.org/
sam10
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Posts: 1436
Joined: Sat Feb 20, 2010 12:04 am
Location: Boston, MA

Re: MTHFR

Postby angieb » Wed Sep 19, 2012 03:29 pm

by angieb (1192 Posts), Wed Sep 19, 2012 03:29 pm

Different doctors have different perspectives on lovenox.

My MFM put me on it, even with no blood clotting disorders that they found, because of the severe IUGR in my daughter's case and a placenta that did not look too good (lots of infarcts for gestational age). (I was also on low dose aspirin.) However, I met with a different MFM at a different hospital who saw my same medical info and said absolutely not. I could have went with either MFM, but I was more comfortable being on it. I was well appraised of the risks but thought it was worth it.

I also have 2 friends who have MTHFR- just one copy of mthfr I think, for both- but they both have a history of unexplained stillbirth after 32 weeks (one was 33 wks, one was 34 wks), and in both cases MTHFR was the *only* thing that showed up "abnormal" anywhere, including autopsies. (FYI, I met them both through our infant loss support group, I didn't know them before their losses, lest I sound like a freak who curses all my friends' pregnancies.) One friend was sent by her MFM to a hematologist, who recommended lovenox and low dose aspirin for pregnancies. The other friend just saw an MFM (which happens to be my mfm the one who put me on lovenox) and was only put on aspirin. Both of my friends' mfm's are even in the same practice. (And both my friends went on to have healthy babies and uneventful pregnancies even with the different treatments.)

So anyway, my point is, there are still very mixed thoughts on anticoagulants. Don't feel like you have to stop at the first MFM you meet with if you are not comfortable with their treatment plan, it is quite likely you may find someone else who would recommend it. (Sucks that they are so mixed b/c I feel like that puts a lot of pressure on us to chose the "right" doctor, all I can tell you is to talk it over, hear out their explanation on why or why not, and decide if you are comfortable with that.) Good luck!
Me (29) DH (30)
#1-Olivia Caetlyn-9-28-09-9-28-09, 23+2 wks, emergency classic c-section, class I HELLP, IUGR
#2- Lucas Oliver (rainbow baby)- April 2011, 36+2 wks, HELLP and pre-e free! (lovenox and LDA pregnancy)
#3-Matthew, late October 2012...mostly normal, 37 wks, (lovenox and LDA again)
My blog: http://www.butterflies-and-rainbows.blogspot.com/
angieb
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Re: MTHFR

Postby ellemoon » Wed Sep 19, 2012 08:14 pm

by ellemoon (47 Posts), Wed Sep 19, 2012 08:14 pm

Thanks so much for your input, guys. It's so hard to know the right thing to do. I guess doctors don't even know the "right" thing to do so it's even worse. From the research I've done with Lovenox, the only real risks are to the mother right? Risk of bleeding if injured or something? I've heard so many success stories with Lovenox and given my history: lots of infarcts in placenta for gestational age, placental abruption, clot in placenta, superficial DVT in calf 6 days after c-section and my already high risk family history of Cardiovascular disease and early onset pre-e. So, I feel like anything that may help is worth it. I will wait and see what my results are and then consult with the MFM and my OB and see what they say. From what I've read the homozygous 677TT mutation is the worst and it requires anticoagulation therapy the most, is that right?
Thanks again for all your help!
Leslie (26) DH (28)
Chronic hypertensive since age 17
DD- born April 24, 2011 due to severe pre-e at 29w1d weighing 2lbs, 11oz
Diagnosed with homozygous MTHFR C677T
Pregnant with #2! Due 9/2/13 but will deliver at 36-37 weeks due to classical csection.
(Labetolol, HCTZ, Aspirin 81mg, Calcium, Mag, Zinc, D, Fish Oil, Fiber gummies, Folic Acid)
ellemoon
Registered User
 
Posts: 47
Joined: Thu May 17, 2012 02:14 pm

Re: MTHFR

Postby sam10 » Wed Sep 19, 2012 08:46 pm

by sam10 (1436 Posts), Wed Sep 19, 2012 08:46 pm

I am sure your doctors will look at your pregnancy history, hopefully including your placenta pathology, and your family history, your homocysteine levels, and other health factors. Based on all that info they should be able to recommend the prenatal care that is right for you. You might want to raise with them that you would feel better to get lovenox than not, and see what they have to say.
If one mutation is more prone to clotting than the other, I don't know. But would be interesting to hear what your doctors have to say about that.
~Julija (40)
MC 3/2009 and 3/2011
Henry (1/1/2010-1/7/2010) - forever loved and missed; severe PE with Hellp; partial placental abruption, classical c-section at 25.6 weeks
Matilda (Nov. 2012, born at 35.4 weeks) - severe PE


Our pain has been put into words, placed into empty cradles, to remember that all our babies lived, that they mattered and always will. - Field of Cradles http://www.fieldofcradles.org/
sam10
Forum Moderator
 
Posts: 1436
Joined: Sat Feb 20, 2010 12:04 am
Location: Boston, MA


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