Molecular Genetic Testing

l0v3 · October 2014

I'm filling out paperwork for new RE and they are asking if I'd like to be screened for Cystic Fibrosis, Sickle Cell Anemia, Tay-Sachs Disease, Thalasemia and Molecular Genetic Testing. Have you done any of these tests? What are your thoughts on them?

lisa89760 · October 2014

The only one our RE recommended for us is Cystic Fibrosis. We have not yet. If we move to IVF, I will be tested.

SuzyHomemaker07 · October 2014

They can be expensive, I'm looking into them now and probably won't have them done unless we have another loss. I would call your ins company to see of they are covered and at what rate. The RE should be able to give you the medical code of the test to give your ins company. For me, bc those things are so rare I would consider the cost before doing the testing, unless you I had a specific risk factor the RE was addressing.

BunnyBerry · October 2014

Our insurance covered CF testing, so I did it. DH's uro tested him for various mutations, that cost us over $1500 I think. RE did not recommend any genetic testing that I know of.

Sha259 · October 2014

We did not initially do genetic screening for myself or DH, and I had already been screened to be negative for things like CF and SCA. Now that we have done IVF and have had a m/c, I really kind of regret it. Especially getting DH screened. But if the blood work panel after my m/c doesn't show anything, we may be getting DH tested just in case.

Ann612 · October 2014

We have not been tested but as far as I know, neither of us are at a particular risk for any of these issues. Plus unless the results said there was some very large chance of us passing along something, it wouldn't stop us from trying. I do plan on doing whatever tests are available once we are pregnant.

Shauntee · October 2014

I have a similar mindset to @rainbowbridge14‌ we are pretty low risk and haven't tested.

Chasity08 · October 2014

@bluefairy5 - Our RE office does not require it, they just offered it as something we could do, stating if we were at risk for something they could take measures to try and avoid it happening. But ours was only $200, it seems the price varies all over the place.

We opted out just for personal beliefs. If I were to have a mc, I may look in to bloodwork at that point, but right now it just isn't something I would like to do so I declined it and my RE said I was well within my rights to do so.

Ann612 · October 2014

@bluefairy5 No, testing of this sort was never even mentioned to us.

mshandlebar · October 2014

@bluefairy5 Genetic testing was never brought up with us either. It may be a NYC thing. I have a friend who is seeing an RE in Manhattan, and he made her go through all the genetic testing. And, that was for an IUI. $2700 worth! She was a little too trusting and just went along with whatever blood work he ordered without really asking what it was for. Personally, it sounds like a bit of a scam to me.

l0v3 · October 2014

mshandlebar said:

@bluefairy5 Genetic testing was never brought up with us either. It may be a NYC thing. I have a friend who is seeing an RE in Manhattan, and he made her go through all the genetic testing. And, that was for an IUI. $2700 worth! She was a little too trusting and just went along with whatever blood work he ordered without really asking what it was for. Personally, it sounds like a bit of a scam to me.

This. That's kind of what I've done with my current RE and that's why I asked the question here first. Nothing in my paperwork says it's mandatory, seems like it's just something that is offered. I plan to talk to the new RE about this before making a decision, but I always like to check with you knowledgable ladies as well

Thanks to everyone for chiming in!

mshandlebar said:

@bluefairy5 Genetic testing was never brought up with us either. It may be a NYC thing. I have a friend who is seeing an RE in Manhattan, and he made her go through all the genetic testing. And, that was for an IUI. $2700 worth! She was a little too trusting and just went along with whatever blood work he ordered without really asking what it was for. Personally, it sounds like a bit of a scam to me.

southernyankeegirl · October 2014

**** Grad / Ticker Warning ****

Hope you don't mind me posting, I waited to see if anyone else piped in but I don't see the information so I thought I'd share!

There's a company called Counsyl that is revolutionizing genetic screening (no, this isn't spam - I am a legit 3T grad for all you newbies, just check ask anyone!). Anyone can request their genetic testing, even if your doctor doesn't typically use that company. They mail a vial to your doctor's office or lab if they don't already carry them for this test, it's a simple blood draw, and they screen for over 140 genetic issues.

If you have any insurance, even if insurance will not cover genetic testing or you haven't met your deductible, Counsyl promises that you won't pay more than $99 out of pocket per person. I know this to be true because I know my insurance wouldn't cover it and we were truly only billed $99 for my test.

ETA: Just because no one has it in your family doesn't mean you couldn't be a carrier. Less likely, certainly, but my 7 year old cousin has Fragile X and he's the first in our family - seems there was a pre-mutated gene going around for a long time. And with things like Cystic Fibrosis, it takes two parents, but many things just take one (especially the mother for X-chromosome issues). Counsyl believes that education is key to stopping these genetic issues, and I do believe it can help educate choices. If I had had the Fragile X chromosome or pre-mutation, we would have skipped straight to IVF with PGD testing.

Hollowvic · October 2014

Like @sugar4bri‌ I had the same genetic testing along with my CD3 bloodwork. If I remember correctly we went to the same RE office, just saw different doctors. I No longer go to that office but when I did! I didn't even have the option, they just automatically did it. I'm glad they did, it was one less thing I had to worry about. I'm currently doing IVF and I asked my new RE if he recommended PGD testing and he said he didn't and that if I wanted to spend the money I could. If I had multiple miscarriages I defiantly would do the PGD testing though. I keep hoping I made the right decision.

Hollowvic · October 2014

Edit to my last post: So frustrating, my stupid IPad constantly capitalizes the second word of my sentences, I swear I'm not illiterate. Also, the ! after "when I did"i s supposed to be a comma, I had to clarify, sorry.

BKAlyssa · October 2014

I was tested for CF since we have 2 nieces with CF on my husband's side. My RE works through a company who bills insurance but will eat the cost if your insurance doesn't cover it. I can't remember the company, sorry. I'll see if I can find it. I just had this done yesterday so I am hoping it actually gets billed like she said it would.

Chasity08 · October 2014

southernyankeegirl said:

There's a company called Counsyl that is revolutionizing genetic screening (no, this isn't spam - I am a legit 3T grad for all you newbies, just check ask anyone!). Anyone can request their genetic testing, even if your doctor doesn't typically use that company. They mail a vial to your doctor's office or lab if they don't already carry them for this test, it's a simple blood draw, and they screen for over 140 genetic issues.

If you have any insurance, even if insurance will not cover genetic testing or you haven't met your deductible, Counsyl promises that you won't pay more than $99 out of pocket per person. I know this to be true because I know my insurance wouldn't cover it and we were truly only billed $99 for my test.

**Grad/Ticker Warning**

This is the company my RE uses as well. It was going to be $200 for DH and I to do of. Again, we chose not to for personal beliefs, but if you want it done I would definitely check them out. My RE raved about how easy they were to work with and how great they were. Good luck!

l0v3 · October 2014

@southernyankeegirl Thank you so much for that info. If I can get the testing done for that little, I'd rather just get it out of the way. One more thing crossed off the list ya know? My appointment is this Thursday and I'll definitely ask about it.

juneroses · October 2014

I did the CF screening, and was shocked when I saw that the company (nautera) had charged my insurance 4k. I have a $1600 balance & instructions to call them to determine how much I have to pay.

I have not been impressed - I probably wouldn't have done it if I had known how expensive it would be.

mharnicker · October 2014

I have psoriasis, psoriatic arthritis and epilepsy. My DH has diabetes on his side. Yes, we are for sure going through the genetic testing!!! If it means our children not having epilepsy I think it's amazing!! RE told us it's 100 dollars to do it. Oh, and when we do finally get pregnant I'll be considered high risk pregnancy and will be monitored like crazy!! I don't care though. Whatever it takes to have a child of our own.

stace2524 · October 2014

My RE recommended I do it before we started IVF but it wasn't mandatory. Since all mine came back negative DH did not have to do it. I haven't seen a bill yet but the piece of mind is great! We're unexplained IF so if IVF doesn't work we don't want to have to back track for any reason.

stace2524 · October 2014

My RE recommended I do it before we started IVF but it wasn't mandatory. Since all mine came back negative DH did not have to do it. I haven't seen a bill yet but the piece of mind is great! We're unexplained IF so if IVF doesn't work we don't want to have to back track for any reason.

stace2524 · October 2014

Oops, sorry for the double post! I can be impatient sometimes!

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