Immune test results back

Joined: November 27th, 2011, 4:22 pm

November 7th, 2014, 4:24 pm #1

I am completely negative for all markers of autoimmune disease. Thyroid is great, Beta­2 Glycoprotein I Ab (IgG, IgA, and IgM) are negative, Anticardiolipin AB IgG/M is negative, and all the Lupus Anticoagulants are negative as well. This is good news, I suppose, but doesn't help explain my POF or all the losses. Sigh...

The one thing that did come back positive is that I'm homozygous for the MTHFR mutation C677T. I expected to be heterozygous, so I suppose it was a bit surprising that I have two copies. Still, my RE doesn't think it's a big deal and just said to increase my folic acid intake. I already take methyl-folate, but I'm wondering what others with this issue have done. Is there a particular brand that is known to be more/less effective? Anything else I need to check? I asked to get my homocysteine levels run because I know it puts me at risk for elevated homocysteine, which puts me at risk for cardiovascular disease.. but if there's anything else, let me know.

At this point, I'm still not even sure we will cycle again, but if we do, I want to make sure I cover all my bases.
Thanks,

Leigh


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Joined: January 16th, 2011, 11:41 pm

November 7th, 2014, 5:10 pm #2

Were you already on lovenox? I tested positive for 2 copies of mthfr c677t in March, just days before my last transfer. We added lovenox the day of ET. I'll never know for sure if that's why these twins stuck when no on could before....

I took Neevo prenatal which is designed for mthfr. It's pricey even if insurance covers (I paid $110 for 90 day supply they mail order). Metanx is another option. Thorne prenatals thru amazon without a script are good too (has methyl folate ).
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Joined: November 27th, 2011, 4:22 pm

November 7th, 2014, 5:39 pm #3

Thank you! No, I've never been on Lovenox and the nurse didn't say anything about it. She just said to increase my folic acid to 5mg, which seems pointless!

I'll check out those supplements for sure. Thanks again!
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Joined: November 28th, 2012, 12:12 am

November 7th, 2014, 5:50 pm #4

Were you already on lovenox? I tested positive for 2 copies of mthfr c677t in March, just days before my last transfer. We added lovenox the day of ET. I'll never know for sure if that's why these twins stuck when no on could before....

I took Neevo prenatal which is designed for mthfr. It's pricey even if insurance covers (I paid $110 for 90 day supply they mail order). Metanx is another option. Thorne prenatals thru amazon without a script are good too (has methyl folate ).
I was heterozygous but because my RE felt that I had other autoimmune markers that made it a potential borderline case she said we'd throw the "kitchen sink" at my last cycle. She stopped short of Lovenox thinking the risks outweighed the benefits but did want me to get more folic acid so I'm taking the Neevo pre-natal. She also had me take a low dose of Prednisone, which I stayed on for the first 10 wks of my PG.
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Joined: September 26th, 2008, 9:06 pm

November 7th, 2014, 8:25 pm #5

Thank you! No, I've never been on Lovenox and the nurse didn't say anything about it. She just said to increase my folic acid to 5mg, which seems pointless!

I'll check out those supplements for sure. Thanks again!
Since you can't absorb it well, you need a lot more during pregnancy to prevent neural tube defects like spina bifida and clefts. I am hetero for both types of MTHFR and also took 5 mg while ttc and during pregnancy. I was also on heparin. In fact, I was told by 3 doctors to always take heparin shots when flying long distances.
PS You can absorb the folic acid more easily if you take it with B6 and B12, according to my RI.
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Joined: July 3rd, 2004, 10:12 pm

November 10th, 2014, 5:20 pm #6

I am completely negative for all markers of autoimmune disease. Thyroid is great, Beta­2 Glycoprotein I Ab (IgG, IgA, and IgM) are negative, Anticardiolipin AB IgG/M is negative, and all the Lupus Anticoagulants are negative as well. This is good news, I suppose, but doesn't help explain my POF or all the losses. Sigh...

The one thing that did come back positive is that I'm homozygous for the MTHFR mutation C677T. I expected to be heterozygous, so I suppose it was a bit surprising that I have two copies. Still, my RE doesn't think it's a big deal and just said to increase my folic acid intake. I already take methyl-folate, but I'm wondering what others with this issue have done. Is there a particular brand that is known to be more/less effective? Anything else I need to check? I asked to get my homocysteine levels run because I know it puts me at risk for elevated homocysteine, which puts me at risk for cardiovascular disease.. but if there's anything else, let me know.

At this point, I'm still not even sure we will cycle again, but if we do, I want to make sure I cover all my bases.
Thanks,

Leigh

cycle without lovenox - I have seen so many people on this board with MTHFR continue to fail without Lovenox and I just don't think it is worth chancing it.

The cocktail of vits I was advised to take by Dr. Beer was 1mg B12, 50mg B6 and 5mg folic acid starting at least 2 months before cycling. I made up these amounts using over the counter vitamins, although you can buy Folgard 2.2. or Metanx or other similar products. They MUST contain those amounts of the vitamins to be effective though. Lovenox should be started on day 6 of your cycle and definitely before transfer if possible.

Best of luck,

Daisy xxx
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Joined: November 27th, 2011, 4:22 pm

November 10th, 2014, 7:14 pm #7

..by the fact that my RE doesn't seem to think this is worth worrying about. She said Lovenox is not necessary and she therefore won't prescribe it without any other markers of a clotting disorder (which I don't have). I also pressed her pretty hard on running additional tests (i.e. homocysteine), but they don't do additional testing beyond what I've already had.

There also seems to be a lot of conflicting information out there about simply increasing the amount of folic acid vs taking the active form of folate, which is methylfolate. It seems to make logical sense that there's no advantage in taking more folic acid, since my body can't process without a fully active MTHFR enzyme (same with b6 and b12). But I don't know, maybe I'm not thinking about it correctly..

Regardless, I'm not sure where to go from here. I've been reading a lot and I'm more than a little freaked out by what I'm reading. Just out of curiosity, have you consulted with a hematologist?

Thanks, Daisy.
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Joined: November 27th, 2011, 4:22 pm

November 10th, 2014, 7:40 pm #8

Were you already on lovenox? I tested positive for 2 copies of mthfr c677t in March, just days before my last transfer. We added lovenox the day of ET. I'll never know for sure if that's why these twins stuck when no on could before....

I took Neevo prenatal which is designed for mthfr. It's pricey even if insurance covers (I paid $110 for 90 day supply they mail order). Metanx is another option. Thorne prenatals thru amazon without a script are good too (has methyl folate ).
Did you see a hematologist or did your RE decide on the Lovenox? I'm concerned with everything I've been reading and I'm wondering if I should press for a hematology consult, especially since my RE sees no value in adding Lovenox.

Thanks!
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Joined: January 16th, 2011, 11:41 pm

November 11th, 2014, 3:58 am #9

My RE at RBA said I needed lovenox when my results of 2 copies if mthfr came back. He didn't really think that my 2 prior losses were bc of mthfr but said he couldn't "not" add on lovenox just in case. I would try to get lovenox thru a hematologist if your RE won't add it.

It's really hard when you can't get something that others tell you about. Even my MFM said I don't need it but allowed me to stay on it bc there was no way I was stopping it.
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