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#1 of 24 Old 12-13-2010, 11:10 AM - Thread Starter
 
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My afp screen came back highly elevated (18 MoM), and they told me that my risk of neural tube defects has risen to 1:4. That's a pretty scary number, and I was just wondering if anyone else has had experience with something similar and had any more information. I'm going in tomorrow for a follow-up ultrasound. Everything looked great on our 13wk ultrasound, so I'm keeping my fingers crossed that there aren't any major problems. Nonetheless, this is pretty devastating news and I'm having a hard time keeping it together.

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#2 of 24 Old 12-13-2010, 11:44 AM
 
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Hi Momma, I'm sorry for your current scare.  I refused the triple screen with this pregnancy.  With my last pregnancy I had a slightly elevated Hcg (2 MoM) and a slightly decreased AFP (0.9 MoM vs 1).  This threw up lots of red flags for Down's.  After an amnio I was cleared.  The Triple screen isn't horribly accurate and can throw out some crazy false positives.  Just remember that even 1:4 means you have a 75% chance that the test is wrong.

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#3 of 24 Old 12-13-2010, 12:00 PM - Thread Starter
 
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Thanks for the support. I hope it is just a false positive, but I've been having a hard time tearing myself away from the medical journals which are just scaring me more. In one study of patients with afp > 8 (mine is 18), there were only 16/46 live births, and 88% of the births were complicated. 

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#4 of 24 Old 12-13-2010, 12:41 PM
 
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Good luck at the U/s. You will be in my thoughts.


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#5 of 24 Old 12-13-2010, 02:37 PM
 
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i hope everything goes well tomorrow.  i'll be thinking about you.  


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#6 of 24 Old 12-13-2010, 04:01 PM
 
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((hugs)) No experience.  Ill be thinking of you tomorrow.

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#7 of 24 Old 12-13-2010, 05:31 PM
 
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Quote:
Originally Posted by KarenMT View Post

 The Triple screen isn't horribly accurate and can throw out some crazy false positives.  Just remember that even 1:4 means you have a 75% chance that the test is wrong.


ITA!  

 

You're in my thoughts, let us know how the u/s goes!
 


-Becky
DH 10/01, DS 1/04, DS 1/06, DS 5/09 (born sleeping), DD 4/11
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#8 of 24 Old 12-15-2010, 12:30 AM - Thread Starter
 
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Well, the ultrasound came back totally normal!! joy.gif Based on what I had read, I was completely shocked. The genetic counselor in fact said that she had never seen a normal ultrasound with my AFP levels. They were able to rule out spina bifida (at least the severe forms), major placental defects, and major abdominal wall defects. Now they suspect a congenital nephrotic syndrome, so we're getting genetic testing for that. They're also sending me to an oncologist to rule out a tumor on my part that could explain the labs. An amnio could have ruled that out as well, but we're trying to avoid that. Hopefully everything will continue to check out ok. I'm still pretty worried since nephrotic syndrome is bad news (often fatal in the first year), but SO relieved that the ultrasound wasn't a total disaster, as I had feared it might be. And we learned that we're carrying a little girl!

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#9 of 24 Old 12-15-2010, 12:56 AM
 
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sillysmile!  Im so glad that the ultrasound came back normal!  Congratulations on finding out that you are carrying a girl!  I hope there were lots of moments of relief and happiness for you guys today.

 

Im praying for false positives for you.  It sounds like you still have alot of stress and worry in front of you and I just really really hope that they are able to get you some answers quick.  I cant imagine and Im sending lots of light and love to you. 

 

Do they have any reason to suspect that from something they found on the U/S.. or just because of the AFP levels and not finding anything else?

 

Ill keep thinking of you!

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#10 of 24 Old 12-15-2010, 01:54 AM
 
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Did you redraw the AFP levels? I don't know if they would offer that. Also, if you near a major university hospital, the risks associated with an amnio drop dramatically. I don't know if you would consider an amnio under any circumstance, but it might give some answers. Did they do an hepatic panel?


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#11 of 24 Old 12-15-2010, 02:07 AM - Thread Starter
 
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geekgolightly - Yep, I had them redraw the AFP, and am really hoping that the last value was a lab error. We'll get those results in a few days. They didn't do a hepatic panel - why do you ask? They did refer me to an oncologist, so I'm guessing that they will be looking for hepatomas and whatever other tumors might secrete afp. Unfortunately the genetic tests are going to take a while longer, and I don't know how I'm going to make it through the wait. I'd definitely consider an amnio if I felt that I would learn something that would change our management, but we're starting with the noninvasive tests to see how far we get. We are near a university hospital, and I will look into their amnio stats (hopefully they're available!) before deciding about that.

 

MamaChef - Thanks for the support and kind words. My understanding is that the lack of ultrasound findings coupled with extremely high AFP is very suggestive of congenital nephrotic syndrome (40-50%). I'm trying to believe that our risk isn't really that high and that there has just been a lab error or that something else less serious is going on.

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#12 of 24 Old 12-15-2010, 02:48 AM
 
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Oh, I asked about the liver panel because it can sometimes be related to Hep C or other liver disease.

 

With this pregnancy, I *had* to know everything so I had an amnio. My stress levels were exceedingly high prior to the amnio and have gone down considerably since I got the clear. I have a long difficult hx though. If you want to ask questions about the amnio or anything, feel free to PM me.

 

I'll be thinking of you and please give an update when you can. <3

 


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#13 of 24 Old 12-15-2010, 08:10 AM
 
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So glad that the u/s was clear and I am praying for positive results all around.   As far as the amnio, if you go to a specialized hospital that deals with maternal-fetal medicine - and I'm sure the genetic counselor can advise of the best place- the risks are really super tiny and they can check every chromosome of the baby. Just a thought, as I had one with my 2nd DD and was worried but we went with one of the major hospitals/teaching locations and their stats were exceptional.

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#14 of 24 Old 12-15-2010, 09:47 AM
 
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I'm sorry you're having to go through all the worry. I'll be praying that everything turns out well for you and your baby!

Happily married, busy mom to a houseful :-)

Expecting again early Oct 2014!

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#15 of 24 Old 12-20-2010, 04:14 PM - Thread Starter
 
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Just wanted to give a quick update.. We've now had 3 AFP's, and our stats are now: 18 (17 wks), 7 (18 wks), 5 (18.5 wks). We've also had 3 ultrasounds over the past few weeks, and everything has checked out perfectly. So.. no answers yet and the AFP's are still fairly elevated, but definitely trending in a more reassuring direction (5 in this case means 5 times higher than the median).

 

We're going to go ahead with the amnio tomorrow so that we can do genetic testing, but won't find out the results on that for about a month. Hopefully this is just a placental bleed that is slowly healing. The other hopeful scenario is that our baby is a carrier for the kidney disease that they are concerned about, but only has one mutation rather than two. Two mutations are required to cause the disease, but occasionally one can elevate AFP with no other complications. I'm trying to stay positive, but I am really anxious for answers and it's going to be a long and difficult wait. 

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#16 of 24 Old 12-20-2010, 05:30 PM
 
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hang in there hug2.gif


Evergreen- Loving my girls Dylan dust.gifage8, Ava energy.gifage 4 and baby Georgia baby.gif (6/3/11).

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#17 of 24 Old 12-20-2010, 05:54 PM
 
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((hug)) - Im praying for you to feel peace during the waiting.

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#18 of 24 Old 12-27-2010, 01:02 PM - Thread Starter
 
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Just wanted to update to say that our amnio AFP results came back this morning, NORMAL!! :) I can't believe it. I was having dreams all last night about terrible outcomes, and then first thing this morning got the good news. Our perinatologists think that this effectively rules out any problems with the baby, and that we don't even need to follow up with the specific genetic testing to confirm. Now I get to go through a battery of tests to rule out cancers (i.e. my own, not the baby's) and such that may have explaned the elevated labs, but I am just so glad that my baby appears to be healthy that all of my capacity to worry has just melted away. What a wonderful Christmas gift :)

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#19 of 24 Old 12-27-2010, 01:19 PM
 
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Sillysmile!!  joy.gif

 

I am so happy for you.  Thankful that your results came back quickly.  It must be such a relief.  Ill keep praying for the rest of your tests but Im just so so so over the moon happy for your update!

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#20 of 24 Old 12-27-2010, 01:26 PM
 
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That is a wonderful CHristmas gift!!!!!


Evergreen- Loving my girls Dylan dust.gifage8, Ava energy.gifage 4 and baby Georgia baby.gif (6/3/11).

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#21 of 24 Old 12-30-2010, 06:56 PM - Thread Starter
 
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I just got my most recent blood AFP results back, and now it's only slightly elevated :) ..18 (17 wks), 7 (18 wks), 5 (18.5 wks), 2 (20 wks)! My abdominal ultrasounds (to rule out cancer) were also clear, so things are looking very good. No one has any idea why there was such a huge elevation. My guess is that the baby is a carrier for this rare kidney disorder, and thankfully carriers have no problems. I am finally starting to calm down and enjoy this pregnancy again. Thank you all for all of your support during this stressful time.

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#22 of 24 Old 12-30-2010, 07:14 PM
 
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yay!  so happy to hear that everything is OK!!


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#23 of 24 Old 05-24-2017, 04:31 PM
 
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Quote:
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<p>I just got my most recent blood AFP results back, and now it's only slightly elevated ..18 (17 wks), 7 (18 wks), 5 (18.5 wks), 2 (20 wks)! My abdominal ultrasounds (to rule out cancer) were also clear, so things are looking very good. No one has any idea why there was such a huge elevation. My guess is that the baby is a carrier for this rare kidney disorder, and thankfully carriers have no problems. I am finally starting to calm down and enjoy this pregnancy again. Thank you all for all of your support during this stressful time.</p>
Hi sillysmile. I know this post is from quite a while ago, but if for some reason you get this would you mind letting me know the medical term or name of the nephrotic syndrome? I received an AFP result of 17, but subsequently had a normal ultrasound, so now will start going through the process you did to rule out all possibilities. Any information you can provide would be helpful. Thanks!
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#24 of 24 Old 09-05-2017, 03:12 PM
 
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One more case of extremely high AFP

Hi jwood723, how did your diagnosis go? My AFP levels are 22 MoM at 17 weeks, with 1:14 chances of neural tube defects. Ultrasound does not show any problems, so I am considering amnio. A bit scared of its side effects, but I guess there is no better option.
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