Guess what girls?! I'm a funky clotter!

Have you suffered from HELLP syndrome or had a pregnancy complicated by an underlying disorder? Discuss your concerns here
laura
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Re : Guess what girls?! I'm a funky clotter!

Postby laura » Tue Dec 12, 2006 10:47 pm

Suz! I'm so happy to "see" you!

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Re : Guess what girls?! I'm a funky clotter!

Postby sweetiesuzy » Tue Dec 12, 2006 08:23 pm

Welcome aboard! I just went through this with my last pregnancy [:)] I tested positive for lupus anticoagulant and one of the pro thrombin genes. Took lovenox, was sicker then ever. Had a pre term baby - seven weeks early. Got re tested last month and I am now negative for both of those clotting disoders. Pregnancy can do funky things to us. Especially with a history of PE, CHT, and on and on.

I hope your pregnancy goes well Laura. I am glad you declined the heparin. If you ever need a sounding board... you know my email.

Love,

laura
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Re : Guess what girls?! I'm a funky clotter!

Postby laura » Wed Dec 06, 2006 01:12 pm

Well, you know, I try to put myself out there for members- no cost is too high- PCOS, chronic htn, funky clotting- there's no end to what I'll do in the name of the PF! I'm one stop shopping! Hahaa, just kidding.

fiona
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Re : Guess what girls?! I'm a funky clotter!

Postby fiona » Wed Dec 06, 2006 01:05 pm

Laura! I go away for a week and you join another club. Tsk.

I think you should video your appointments - we could use them as an assertiveness training exercise for our preggos who need to pin their OBs to the wall from time to time.

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Re : Guess what girls?! I'm a funky clotter!

Postby deerhart » Tue Nov 28, 2006 01:15 pm

LOL Anne, I still had mucky blood 10 months later as my fibrinogen was nice a high!

Yes high fibrinogen is bad. This is the substance in your blood that makes it clot. Basically if its high your blood is more likely to stick together for no reason. Now with you and the prolonged PTT what is happening is called a clotting cascade. With this your body is forming so many clots that even though you have a ton of fibrinogen in your body, its using it up faster then it can replace it. Thus a real wound is not being clotted, as the fibrinogen can't get there (its used up before it can) leading to the prolonged PTT. This is the primary systematic response that leads to DIC, but that is an extreme clotting cascade, it probably comes in different severity levels. i know Caryn and I had a discussion on clotting cascades awhile back.

Welcome to the clotter club Laura!

missgamecock
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Re : Guess what girls?! I'm a funky clotter!

Postby missgamecock » Tue Nov 28, 2006 08:04 am

Melissa is the expert on the MTHFR mutation. She had a whole bunch of threads on it awhile back. She's been busy taking care of baby Kate, launching a new business, and moving to OH. Maybe she'll pop in and can answer some of your questions.

Interesting about the fibrogen because I didn't understand how that worked. Mine was high when Kirsten was born (not abnormally high though, just a little high) but my PTT was very prolonged. I didn't know that too much causes clots.

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Re : Guess what girls?! I'm a funky clotter!

Postby annegarrett » Tue Nov 28, 2006 02:26 am

You've moved out of my "professed" expertise. I think TE said that (as he is apt to do) MTHFR is pretty darn common (something like 15%?) but have meant to say this for awhile and now seems a good time--I think you'all are great but you CAN (and should) correct me. I am so not an expert. So if I am utterly wrong about this, or imagining a conversation with my favorite peri friend, then slap me about the face and say so. And the little c with numbers thing? First I ever heard about it. Shows what I know.

I do suspect that this is me though--at delivery with Kieran (the life-threatening pregnancy) my fibrinogen was normal and then it doubled every 24 hours until I was clearly at risk of stroke a week later when readmitted (when that whacky doctor said I just had a "percostet-constipation" cycle thing going on and my BP of 180/120 was okay cause I wasn't pregnant. Uh-huh--whatever...) SO when I read the records later and noticed this fibrinogen thing--asked TE about it and he sort of waved me away and said all preeclampsia women have "mucky" blood. :) Nice. Very technical too.

Hang in there oh Director of Support. Have been craving a visit to your frozen wonderland...maybe for Fur Rendevouz. I could pretend to be a MTHFR if that would help. :) I think I could pass for one! ;)

laura
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Re : Guess what girls?! I'm a funky clotter!

Postby laura » Tue Nov 28, 2006 00:30 am

quote:Originally posted by Caryn

quote:Originally posted by Laura

c677t

The cool thing about that one is that apparently it can make you metabolically obese even when you're of normal weight, given another mutation too...


What's interesting about that is that apparently the peri the doc consulted with said that as far as he knew, the only ones who really needed to worry about heparin or clots were those with this mutation. Are most of you MTHFR girls out there aware if you've been tested for this c677t?

laura
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Re : Guess what girls?! I'm a funky clotter!

Postby laura » Tue Nov 28, 2006 00:24 am

quote:Originally posted by leftcoastgirl

Can I ask you more about this MTHFR (I can't help but giggle when I see that acronym!). Does this mean a better prognosis for you?? Is this better than just being a typical pe-'er?

Thanks,

~J

It figures that I'd get something that would make my momma smack my mouth if I said it out loud...

I am *not* one of the resident science chicks, so I generally operate at the Sesame Street (maybe the Electric Company!) level.

MTHFR is a genetic mutation that causes you not to process an amino acid properly, and because of that you run the risk of having high homocysteine levels.

The high homocysteine levels put you at risk of blood clots and mucking out vessels, which can ruin your day and lead to heart disease- or bad placentas and PE.

To combat this- some docs put you on aspirin- to reduce blood clots- and B vitamins, which can reduce high homocysteine levels. Some docs recommend bigger guns- heparin or lovenox to really knock out the potential for clots.

I'm in good shape- I have the mutation, but my homocysteine levels are low, so functionally, I shouldn't have a problem, so I'm not too worried about declining the heparin.

Prognosis wise- MTHFR can be considered a risk for the pregnancy and for later life, but I feel like it is better to know the enemy and I feel a little silly that I didn't get the thrombophilia panel done sooner (before #3 at least!) partially because I'm Native American, and thrombophilias are more associated with caucasian women.

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caryn
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Re : Guess what girls?! I'm a funky clotter!

Postby caryn » Tue Nov 28, 2006 00:24 am

quote:Originally posted by Laura

c677t

The cool thing about that one is that apparently it can make you metabolically obese even when you're of normal weight, given another mutation too...

http://www.ncbi.nlm.nih.gov/entrez/quer ... med_docsum


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