Unexplained: What To Get Tested For (Outside of the Norm)

cxsimo08 · October 2017

Hi Ladies,

As some of you might know, I sadly had my second failed IVF this month with no blasts on day 5 so nothing to test/ freeze. I just turned 31, diagnosed unexplained, and have done 3 IUI's, a few drug cycles, and 2 IVFs. I'm feeling pretty hopeless and have run out of funds for further procedures, so I'm trying to figure out what I can do next.

The reason for my post is I am reading "It Starts with an Egg" thanks to some recommendations on this board

and the book mentions getting tested for Vitamin D, Thyroid Antibodies, and Celiac Disease. I've had the regular tests: Genetic testing (allele and for any type of mutations), full blood panel (which included Thyroid/Antibodies), Hormone Levels, HSG,Sonohysterogram etc. I have not had tests for Vitamin D or Celiac so I will request that. I'm also going to ask if she can check my BPA toxicity levels.

My question for you is, are there other test I should be asking for that I have not yet done? Maybe something autoimmune for me or DH? Anything else? I know its a broad question but hoping you and your doctors may know of certain tests that I may have missed. I would like to come to her with a long list so we can see if there is something I can do going forward outside of another round of treatment.

Thanks so much

I don't know what I would do without you all.

adirat · October 2017

@cxsimo08 Hugs friend. It's been such a long road for you. The items you list sound good. Have you ever been checked for antiphospholipid antibodies? Some REs check it standard and others don't.

Another thing I've been reading about lately is an endometrial receptivity array, to see if embryo transfers happen at the right time for your body.

I found this very helpful: https://www.reddit.com/r/infertility/comments/62j7o8/info_post_why_did_my_embryo_transfer_or_fet_fail/

I hope you can find some answers.

cxsimo08 · October 2017

@adirat Thank you SO much! I just looked at my labs and I did not get tested for Antiphospholipid Antibodies or Endometrial Receptivity Array so I will add those to my list. Also that link is great, super detailed. I'll go through it tonight. Thanks so much again.

PS. Your gif is adorable lol- I'm definitely the Thor puppy stuck in his helmet with no idea everyone left! Ha!

adirat · October 2017

Thanks! So happy to help in any small way. I hope you get a path forward.

bethann1022 · October 2017

@cxsimo08 sorry to hear about your 2 unsuccessful IVF cycles. I just wanted to give you some additional info on the ERA (Endometrial Receptive Array) as it is becoming much more known and research is starting to show that it can be effective. After I had gone through 2 IVF cycles (both freeze alls) and 3 FET cycles (2 single and 1 double), my RE strongly recommended it as I was taking Crinone for 4 days prior to each transfer and she had a feeling it was an implantation issue.

So in June, I had this test done, you prep for an FET (whatever process your clinic uses, mine does estrogen patches and progesterone) and the first cycle I did 4 days of Crinone as I had done each of my 3 failed transfers. On the day when ET would be, instead you have an endometrial biopsy performed and it is sent to the lab for the ERA testing (you can find information on it on the Igonomix website I believe). The test (lab fees) is not covered by insurance (biopsy procedure typically is I believe as it's medical) as it is still considered "experimental," for insurance purposes. In about 2 weeks you'll get a result showing when you're lining is pre-receptive (you need more days of progesterone), receptive (perfect timing for implantation) or post-receptive (need less progesterone). Most of the time they're able to give you a narrow estimated window if it needs adjustment (i.e an additional 12 hours of progesterone, or 24 hours less etc.) and this is said to be 85-90% accurate I believe, so a lot of women go ahead and transfer their next cycle with this recommended window. However, for mine, it showed that I was 2+ days pre-receptive and it only gave a 5% accuracy that 2 more days of Crinone would make my lining ready for implantation. My RE concluded that my body must not absorb it properly. So we had to repeat the ERA the next cycle, and this time did 6 days of PIO and the result came back as "receptive." So we at least know the right timing for transfer each cycle now.

Anyway, I am currently in my TWW for my first cycle after these test results (beta is tomorrow), with our final frozen embryo. I don't know yet if it is successful, but excited to at least be hopeful that with these 2 additional days of progesterone, it should not be an implantation problem and would most likely be an embryo issue at this point.

I know this is a lot of information and I am not sure what happened with your first IVF cycle, but from my experience (and consulting with 3 different RE's) this test is typically used with multiple failed transfers. I think it can only be used for 5 day transfers (and I believe if the results differ from the typical 5 days of progesterone, you would have to do a freeze all of any 5 day blasts and do an FET the next cycle, to account for the adjustment in progesterone). It still may be helpful to complete if you're interested in determining your implantation window so if you do complete another IVF cycle you'll know that you're transferring the embryos into a receptive atmosphere.

I don't know much about the additional testing, I have had low Vitamin D and been on supplements for many years, this is something typically my PCP tests annually and I take a pretty high OTC dose (5000 daily). I live in New England, and because of the lack of sunlight in winter, most people need supplementation. I think some of the other tests you brought up are good to discuss.

Oh, one more thing an RE I consulted with informed me, he said that if we continue to have failed transfers or even such a low number of embryos each cycle (we have had 2 and 3 each cycle out of 16 eggs retrieved) that he would recommend sperm DNA analysis. I believe he said that it would also be out of pocket and it is sent to a lab in (Montana maybe?) but that some medications cause (and there may be other reasons), various sperm DNA fragmentations as well as other issues not noted on a sperm analysis. He explained that most times if a sperm analysis is normal and there are issues with embryo development, many RE's will look at the female eggs as primary problem, when he said in fact, there are many instances when it is actually sperm DNA that prevents healthy embryos from developing. May also be a test to discuss with your RE.

Good luck with wherever this path may lead you.

cxsimo08 · October 2017

@bethann1022 Oh my goodness, thank you so much for all of this incredibly helpful information! Its good to understand how the Endometrial Receptive Array worked for you and how your doctor adjusted based on results. I'm wondering if my doctor would be willing to do that for me even if I didn't do another cycle, just to rule that out as a potential problem (or maybe have an explanation to unexplained).

I also think its a great idea to have DH's sperm analyzed. It looks normal in all viewable ways, but what's interesting is all my embryos stop growing around day 3/4 which is when Sperm DNA starts kicking in so maybe something is there. When I brought it up before my doctor kind of brushed it off pointing to odds around female issue, but If there is anything we can do to rule it out or not, I would want to know.

BTW I'm New England too (with a desk job) but I feel like I haven't had a vitamin workup in a while so I'll definitely check that D. I didn't even think about how climate could have an impact on your vitamin intake!

Thank you SO MUCH again! I hope your 2WW goes by super fast, and that you get wonderful news very soon! Wishing all the best for you and I'll be thinking of you and will check on the boards to hear how your Beta goes!

funkykey · October 2017

Hi @cxsimo08 - I'm so sorry for your journey, and for the two failed rounds of IVF. Ugh.

If you retrieved a reasonable number of eggs and the embryos stopped growing around day 3/4, I'd definitely focus my extra testing efforts on the sperm. I think the Sperm DNA Fragmentation testing might be a good idea for you.

Also, it's an obvious one, but I'm assuming you've already had your AMH tested? My RE recommends it as a standard, but technically (at least at my clinic), it's an extra test.

Good luck to you!

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