(i'm not trying to start any moral war between anyone! I'm just looking for opinions, which we can all respect!)
I had my first appointment with a RE yesterday and they gave us the option of doing Genetic Disease testing prior to starting treatment. I'm so torn for many reasons!
1. It will delay starting any process by 3 weeks
2. I don't even know if i want/need this information
3. on the other hand, why wouldn't I want to take advantage of how far science and technology has come?
4. we don't have any family history of issues so is this a waste?
I'm just looking to see what your train of thought was! I'm really very torn!
pineapple / 12053 posts
Not me but one of my best friends did testing specifically for Cystic Fibrosis because of family history and her experience with having people she knew with it. She was a carrier but her DH was not. They did all this before TTC as they might not have tried for a bio child if they were both carriers.
grapefruit / 4703 posts
@MrstypeA: it's standard and required at my RE's office, so we got it done. This isn't PGD (where you're testing embryos and discarding genetically abnormal ones) it's just testing to see if you're a carrier for certain diseases. I think the reasoning is that there could be a translocation or other genetic issue causing your infertility. I don't really see a reason not to do it, to be honest, other than maybe the cost. Mine was covered by insurance but the OOP cost was over $1k.
cherry / 126 posts
@Shutterbug: ah! thank you! mine is optional, which is why i was a little put off by it but logically it makes sense to check but the fact that it was optional seemed off. thank you!
squash / 13208 posts
@MrstypeA: We met with a genetic counselor first and after reviewing our history said we didn't need the testing - is that an option?
Another thought is that although there are no previous issues in your family it has to start somewhere...what if it was you or DH? Might be worth it
coconut / 8472 posts
We had it done, but it was kind of a waste. My RE pushed for us to do it, even though we don't have a family history of anything. And it was supposed to be covered, but they sent it to some lab that was out of network and I initially got hit with a huge bill for it. I argued with the insurance company and luckily didn't have to pay it. If the whole thing hadn't been covered, I think it was over $1500.
We didn't need IVF (so we weren't doing PGD) and we ended up not being carriers of anything to be concerned about. If I had it to do over again I would have skipped it or had it done only if we moved to IVF.
bananas / 9229 posts
The RE also recommended it for us. I'm glad, despite the delays that came alone with it, because it turned out I'm a carrier for something totally unexpected and DH's ancestry also put him at risk. My sister has a 50% chance of being a carrier too so it helps to know that for her now too.
hostess / wonderful apple seed / 16729 posts
We were required to do it and used the Counsyl. It was only $99 and so it wasn't a big deal. I was interested in what it would find out. We found nothing but it was still good info to have and to see what our risks were. I think knowledge is power and unless we found something severe, I doubt we stop treatment because of what we would find on the test.
Long time ago, I applied to be an egg donator and used the same test. So when I went to see an RE, I didn't have any issues doing it again.
Now as for PGD for my current IVF cycle, I did not do that. I think the genetic test that I took prior to doing IF treatments was sufficient.
wonderful grape / 20453 posts
I opted in to some testing because I had two losses in a row. If we had a major issue, we would have to filter out the good eggs and such, so I wanted to know what issue we could have been facing
honeydew / 7968 posts
We opted out since we weren't at risk and there were no issues re: family history.
squash / 13764 posts
We had it done because there is a family history of people being carriers for a fatal illness. turns out I am a carrier but DH is not.
pomelo / 5256 posts
I did the testing because my OB recommended it when I told her I was going to TTC within a year. I didn't have any risk factors but it was nice to have that out of the way prior to BFP. One less thing to worry about.
pomegranate / 3533 posts
DH and I did 23andMe. It confirmed his (already known) carrier status and showed that I am a carrier for something different and unrelated, so neither of these was a big issue. I think CF testing was the only pre-IVF genetic testing recommended by my RE. Genetic testing (including a karyotype) is not covered by insurance and is quite expensive.
pomegranate / 3398 posts
We did for Cystic Fibrosis. I'm a carrier, luckily DH is not.
cherry / 126 posts
Thanks for all of your input!! Much appreciated!
nectarine / 2173 posts
Family history can be falsely reassuring at times. The Cousyl test is only $99. If there was an abnormality, it might change your plans.
pear / 1558 posts
We did Counsyl. I don't think that (or our recent non-invasive prenatal screen) would've prompted us to take any action, but we're both of the mindset that more info is good, to us. We like to be informed & have time to think through stuff. I did learn I am a CF carrier, fortunately DH is not.
pear / 1750 posts
We had the testing done because it was required by our fertility clinic. It's nice to know there are no genetic risk factors. It's not reason that I've been lax about doing screening tests during my first trimester.
coffee bean / 34 posts
We did the blood test and found out I'm a carrier for cystic fibrosis. I had no idea! No one in our family has the disease but somewhere along the line, someone must've been a carrier. I recommend doing the testing. Dh is not a carrier so we don't have any risk of having a baby with the disease. They just might be a carrier too.
clementine / 750 posts
I did the Counsyl Test. I'm a rare of a weird serious disease but DH isn't so all good. I'm also a carrier for something that can make you slow to wake up from anesthesia. Carriers can have issues if they have that gene but anesthesiologists can compensate.
bananas / 9229 posts
Recombine is another test that is $99, if you have insurance (that's the max out of pocket).
honeydew / 7463 posts
I had 2 losses in a row and my OB at the time thought it was weird so she first tested the fetal tissue. This revealed a partial trisomy 18 which prompted her to recommend karyotyping for my husband and I. Thank God she was proactive because it turns out I have a balanced translocation. That outcome has forever changed TTC for us - I'll always have to do IVF with PGD because the risk of T18 and T20 are so high and they are both so devastating.
I just wanted to share this because family history doesn't necessarily mean all is OK. It might be a good indicator but it's not 100%. No one else in my family suffered from miscarriages or T18/20, so had we not been tested who knows how many more miscarriages I would have had, or worse. And I most definitely wouldn't be holding my perfect 10 week old son right now