Has there been any new info re: underlying tests?

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laura
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Re : Has there been any new info re: underlying tests?

Postby laura » Wed Apr 15, 638939 7:05 pm

If I recall correctly, the lupus anticoagulant is not related to the autoimmune disease lupus, but suggesting it to your doc to take into account in the context of your larger medical picture would be good.

I know it never pays to bet against the bank- or in this case the peer reviewed study- but I remain a fan of testing for underlying disorders, both for peace of mind and for supplement sake.

I'm a homozygous MTHFR gal, and finally got a pregnancy to term with my third child with large dose folate and LDA. Is my one anecdotal story worthy of triggering a run on the vitamin market for all pregnant women with a history of bad pregnancies? Not necessarily, but I sure appreciated it.

That being said- all that testing was crazy expensive. If your insurance doesn't cover it, I don't think I'd lose too much sleep over it.

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jean
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Re : Has there been any new info re: underlying tests?

Postby jean » Mon Jan 12, 638939 10:20 am

Caryn, do you think it's still important to get the Lupus test done? (Esp. since I am sun-sensitive...I read that can be a sign of lupus). Should I keep bugging my peri to get at least that one done? Or is that test not proven to help, just like all the rest?
Also, do you think that sound right about what he said about blood in the placenta being the baby's blood and not mine? I mailed you on here, but am not sure that you got it.

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jean
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Re : Has there been any new info re: underlying tests?

Postby jean » Fri Aug 03, 638936 8:53 pm

I think so (?) My mom had pre-eclmapsia, so I think the hereditary factor plays a big part in why I got HELLP. I got a lot sicker than she did though, and much earlier.

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kerisue
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Re : Has there been any new info re: underlying tests?

Postby kerisue » Tue Jul 24, 638936 7:25 am

I was a preemie too! Does that contribute to PE/HELLP risk??

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jean
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Re : Has there been any new info re: underlying tests?

Postby jean » Mon Jul 23, 638936 5:58 pm

Initially, my peri wrote a letter to my insurance company. They did a "pre-evaluation" to see if they'd cover the tests...then they came back with "The tests are not a necessity, they are preventative, and therefore will not be covered at all." :( After hearing that, my peri said what I mentioned above about how they didn't help anyway.
I think that going on LDA is a treatment for some of the tests (am I right about that?) and my peri said I could go on it regardless of whether I tested or not...so I was planning on doing that. (There aren't any huge risks associated with that, are there? My peri said to go ahead and take it and my ob didn't seem to like the idea..so I have conflicting opinions there..) If I went on it, there would be no need to have tests done that require treatment as LDA. But as for the other tests....I don't know. How many tests would that eliminate? Thanks for the link Caryn-it sounds like they're saying they just need to do more trials about it. But does that mean necessarily that the treatments don't work? I can understand that treating everyone with pre-e w/heparin for example might not work for everyone. But how about just the people that tested positive for factor v or mthfr or whatever (whichever tests it is that require extra blood thinners)....then is it helpful?
I feel like I'm really being a thorn in my doctor's sides...because I keep coming back to this over and over again and keep getting rejected on it.
I don't have chronic hypertension-I haven't been diagnosed with it as of yet anyway. My BP postpartum seems to range anywhere from 117/70-142/90 (when really stressed). But for the most part, it stays around 117/70.
I really do wonder if I should at least get the lupus anticoagulant one though, because during the summer I have polymorphus light eruption, and I read that skin irritation from the sun can be a sign of lupus. But is the lupus anticoagulant test related to just plain "lups" or is that something else? And no one else in my family that I know of has ever had lupus or anything. (But then again, I am not aware that they had any of the disorders that are checked on for the underlying conditions)
I don't know. I'm starting to wonder if maybe the doctors are right and that I just got HELLP because I was a preemie myself. I don't know. I don't have many choices of doctors here (only 1 peri choice)...and if I become too much of a bother to them, I worry that they may not take me seriously and want to be working with me in the future when/if I am pregnant again.

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caryn
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Re : Has there been any new info re: underlying tests?

Postby caryn » Mon Jul 23, 638936 12:43 pm

Here's one of the relevant articles: http://www.ncbi.nlm.nih.gov/pubmed/17094039

Based on our review, routine screening for thrombophilias in women with a history of adverse pregnancy outcome (preeclampsia, abruptio placenta, intrauterine growth restriction, and fetal loss) is not justified.

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caryn
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Re : Has there been any new info re: underlying tests?

Postby caryn » Mon Jul 23, 638936 12:33 pm

For some conditions, yes -- they've proven that treating the whole population of women with underlying condition X doesn't reduce the rate of preeclampsia in that population. So doing the tests only exposes you to risk with no clinical benefit; if the doc's going to watch you closely for recurrent preeclampsia *anyway* because you've got a history, then the testing tells you nothing. And some of the therapies -- injectibles in particular -- expose you to significant risk of things like bone demineralization; if there's no benefit to pregnancy, why increase your chance of hip fracture in the future?

In some cases, the underlying conditions are ones that have usually been handled with lifetime interventions -- folic acid supplementation and a baby aspirin every day, for example -- but a) not all of the things that have been labeled as "underlying conditions" merit that sort of management and b) there's some reason to think there's no benefit to this sort of management even though we used to think that there was and that it could elevate other risks (particularly of cancer and of bleeding complications.)

MTHFR polymorphisms are like this in some cases. They are so common that they're not really an underlying condition, just a gene that pops up in about 30% of Caucasians etc. So even if in one sample of preeclamptics there were more women with one particular MTHFR variant, that doesn't necessarily mean anything but a sampling error. If a third of women have this particular variant of MTHFR and another third have this other variant of MTHFR, and the last third have a range of polymorphisms and none of them get preeclampsia any more often than the others in their first pregnancies and it doesn't affect any of their bloodwork levels, what's the point of testing for it, kwim?

Now the question for the doc is: are there *any* underlying conditions that I *should* be tested for because managing them would improve my outcome, and can I be tested for those please? But this varies a lot by case. For me, my underlying condition was clearly chronic hypertension given how long it took for my pressures to drop postpartum and my family history; my care providers didn't see a point to underlying thrombophilia testing when I lived in Phoenix. When I moved to Pittsburgh I got a provider who was a bit more gung ho; we tested for Factor V and came up negative, and even so decided there was no point to MTHFR testing.

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danielsmom
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Re : Has there been any new info re: underlying tests?

Postby danielsmom » Mon Jul 23, 638936 11:58 am

Jean - your insurance wouldn't cover this even though you've had a high risk pregnancy? Weird... could it be that the doctor did not justify it well in writing? I hate red tape.

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danielsmom
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Re : Has there been any new info re: underlying tests?

Postby danielsmom » Mon Jul 23, 638936 11:52 am

Whoa, hold up. It is certainly plausible that the current known treatment for these underlying conditions may be less than effective, but what's wrong with having information? The best advice my MFM gave me was to always have the BEST information. It's always changing, this we know, but get as much of good info that you possibly can, THEN make the best decisions you can. If it were me, I'd run the testing. What can it hurt? Studies are complicated. Medicine is complex. We don't yet know everything about this. Have they PROVEN that treatment does NOT work?

Sometimes it's not that there's ONE thing wrong, it's what the whole picture tells us. I don't like missing puzzle pieces. I would be skeptical of any doctor who didn't want to completely assess his/her patient.

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jean
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Re : Has there been any new info re: underlying tests?

Postby jean » Thu Jul 12, 638936 9:55 am

Ok...maybe I should do as my mom says and "give up on the testing thing" then...
*sigh*
(I might still ask my normal doctor about the lupus one though just in case)
Thanks for the input everybody.


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