September 24, 2011

This Is Why I Don't Trust My Body

The ultrasound went well today. Test results, not so much.

Kiddo is still measuring on track - 6.7cm (about 2.5 inches) at 13w0d. I was thinking that measuring on track is a good indication of the health of the pregnancy, but the ultrasound tech dispelled that notion today. Apparently, because the size is so small at this point, the chance of being off on the measurement is too high to be a good indicator of the pregnancy's health.

She said they don't start to use measurements for that until about halfway through. Still, we've had consistent growth, and I'm hoping that's at least a good sign.

But test results are proving to be the bane of my existence.

We got the official results of the NK scan today. Risk of Down's is 1 in 6,600, and risk of Trisomy 13/18 is 1 in 6,800, so both of those are very good. We saw the nurse practitioner today, and she went over that table of results with us.

I didn't look at the results of the 3 individual tests that make up the results until we were in the car. The NT itself was 1.3, which we already knew was normal, and it was in the 50th percentile for results. PAPP-A was 0.90 mlU/ml and was in the 60th percentile.

Then there was the free beta HCG, which was 20.88 ng/ml, in the 5th percentile.

I know beta levels drop as the second trimester approaches, and free beta is much lower than the quant beta measured at the beginning of pregnancy. The one reference I was able to find for the difference between the two said that the free beta is generally about 1/2 of 1% of the quant beta, which would put my quant somewhere around 4,000.

The 4,000 is pretty low for this point, but I've been focusing more on the free beta results. From what I have found online (I know, shame on me for Googling), free beta results that are in the 5th percentile or lower on the NT screening have 2-3 times the risk for delivery before 37 weeks and the baby being in less than the 10th percentile for growth, and about 5 times the risk of fetal loss before 24 weeks.

So, I don't see myself relaxing much before 30 weeks.

Then after that, I got this morning's progesterone results. I'd been off of everything for 2 days. It was 17.45.

It was the optimistic nurse who called, and even she seemed rather concerned. I asked her if this happens often, and she said pretty much everyone is off of everything by 12 weeks and has a level above 20 at that point. I'm a week further along, and still not there.

She is checking with RE to see what he recommends. I may not hear back until Monday, but she explained that either way, it would just be a recommendation. Since I'm at 13 weeks, they won't continue my care, so the peri would have to be the one to prescribe it if he recommends I stay on it. She also wouldn't tell me what I should do over the weekend, but she asked me what I thought I might do, and I told her I was going to immediately restart the suppositories.

I was going to wait until Monday to call the peri, but my friend who referred me to her said to just call the peri now rather than stress all weekend, so I'm going to call her tomorrow morning. I'm going to insist on continuing the progesterone and regularly checking the levels for the duration of the pregnancy. We've approached our whole infertility experience - and this cycle in particular - with a "no regrets" attitude. I realize progesterone won't stop something bad from happening if there's something else that is a problem, but if something does go wrong and I'm not on it/don't have good levels, I know with 100% certainty that I would always have regrets about that. If she isn't willing to prescribe it, I think the RI would, so I'll go that route if need be.

From everything I've read and been told, there's no risk or adverse outcome associated with being on it in the 2nd and 3rd trimesters, Given that, it doesn' t make sense to me to not treat it and have me worry about it the whole way through. And let's face it, I would worry, big time.

6 comments:

Libby said...

I am amazed at the knowledge you have gathered! I may know a bit about IF but not so much about an ongoing pregnancy. I agree about restarting the progesterone suppositories though. At the time of my first beta for IVF #3, my progesterone was around 7 on the suppositories, and I was accused of skipping some. Not so! I know the suppositories aren't accurately reflected in the blood test, but still, they expected my levels much higher. I just think we are all different, our bodies process meds differently, and since it won't hurt, why not stay on them.

Thanks for the movie suggestions. I have been trying to get my 2 bffs to watch Orphan with me so they would stop nagging me about adoption ; )

Anonymous said...

Rebecca,

PBJmom from IVFC here.

I had a very similar experience. CCRM was keen to wean me by 12 weeks. I was on PIO and my levels would be like 19 two days after a shot. I was worried what would happen when I stopped completely. I could tell the nurse was starting to get irritated with me so I just went ahead and "graduated" and then my OB kept me on PIO through 15 weeks, with regular monitoring and slow tapering, until my levels were 30ish a week after my last shot.

Unlike some people, as much as I respect CCRM and will forever thank them, I just wasn't comfortable saying "what the heck, they know what they are doing, I trust them and will stop PIO".

My OB told me the placenta starts to take over at 10 weeks. Other people will say they have been told 7-8 weeks. All I know is mine seemed to take longer. My OB was fine with me being on PIO that long; the CCRM nurse said I needed to be off by 12 weeks b/c it could affect sexual development.

I ended up with a healthy DD who is now 9 months old. I did have some placental issues apparently--I was induced a little early due to IUGR. But DD is fine and I am glad I stayed on PIO. I really needed it for peace of mind. I think I may have always had some progesterone issues b/c I tended to have a short luteal phase.

Good luck, I think it's worth it to ask your peri and see if they will keep you on it and monitor you.

Silver said...

Ugh - I'm sorry things aren't easy just now. I think you are 100% right to go with your no regrets philosophy. If a bit of extra progesterone can give peace of mind - and who knows what else - and isn't going to hurt you or the bub then go for it. I've never heard of free beta HCG - I thought I was quite well versed too - you learn something new every day, as they say. Crossing everything, as ever!

Nico said...

I think it's great that you're so on top of things. I would want to continue the progesterone also. I always wonder if not being on it was what caused my m/c last year. Much better not to wonder.

And as far as it affecting development I did a lot of research trying to find out if there was any reason not to take it and couldn't find anything. Progestin, (aka provera) can cause hypospadias (defect of the urinary tract) in boys but I did not find one single medical article about negative effects of progesterone. so I think you can rest easy on that front.

Sorry the free beta is also not giving you happy news. Hope it's nothing. fwiw I've never been given the individual test numbers.

Kate said...

I was on progesterone the whole of my pregnancy. They made me stop them at 35 weeks, and then I went overdue. That was after having tons of contractions from 16+2 on. I was going to wean off it at 16 weeks when the contractions started up, and they suggested I use to to try to help the irritable uterus. No idea if it helped or not, but I thought it certainly couldn't hurt. The NaPRO docs are all about physiologic progesterone supplementation in pregnancy and have good success with it in patients with previous losses.
Don't freak out too much about levels. The fact that you have a baby that's still growing well by the NT scan is a good sign. There are no guarantees till you're holding the kiddo in your arms (and then you'll start freaking about SIDS if you're like me), but you're doing great so far.

Sue said...

I am with you on the suppositories..and definitely talk to the peri asap. About the other results, just hang with it. I hate to say it but I've seen so much worry with odd results after the NT scan and blood tests that then resulted in normal babies. I know it is easy for me to say...I know I've been pretty lucky in the grand scheme of things but I still think you are going to feel pretty lucky one day soon too. I am holding on to hope for you!