XP:WTF update (warning: long)

Gregermis

Okay........ so I've had 3 losses... except the 1st two I never had good betas and they both got classified as c/p even though I was 5w3d when I lost the first one. So bearing that in mind, my RE said those first two really don't "count" and I"m not a recurrent loss patient.

This kind of pissed me off at first, but I know we've all read about how the improved HPTs are showing that c/p's are way more common than they thought ... I've never managed to get a BFP on my own, but this isn't all that surprising considering DH's sh!tty progressive motility numbers. So then I started feeling better about her saying those losses "dont' count" because it made me feel like less of a failure.

We talked about doing some more testing.... and I'm going to get a Saline Sono (or Saline infusion.. something like that) but otherwise she doesn't want to run anymore tests because all the stuff she would test for would be if I was m/c around 8-10 weeks. I was okay with it at the time, but not so much anymore now that I"m home. Infertility testing is one thing that insurance does cover and heaven forbid I should spend another $3500 on a FET, get KU, see a heart beat and then m/c at 10 wks because we decided not to looking for clotting disorders. *sigh*

If you made it this far... you rock!  I'd appreciate any thoughts on the testing issue if you have them.  TIA!

chels38026

I don't have any advice, but I wanted to send you lots of (((hugs)))!

pinkmickey24

Let me start by saying once again how sorry I am for your loss. If I were in your shoes I would definitely push for a RPL panel. My thought is what will hurt in the end other than giving you reassurance. Personally I would want to know now if there is a reason for the miscarriage that could have been prevented with such medicines as baby aspirin, etc. and know that the next time I got pregnant I could try to rest a little easier knowing that there are measures in place to try and prevent another miscarriage. Good luck as you move forward and I am sending you lots of support.

Bethany1026

Hi, I was wondering if your protocols included asprin?  I don't know much about the subject, I had one c/p and when we were starting this round I asked my RE if we should add asprin to the protocol...He told me no and he only uses that when you experience multiple losses.  I agree with you, I would want all the testing done first, why wait?  Then if you were to expeience a 10 week loss, like you said, you would be bullsh!t at the RE.  Same with the aspirin for me...why wait til I "experience" more losses...why not just give me the asprin??

It's frustrating! Hang in there and see how much you can get by pushing GL!!

Gregermis

I take a baby asprin on a daily basis for joint pain (I hate tylenol and it seems to help).  The last two cycles I've been allowed to stay on it, but to stop during ER/ET/FET for a few days before and after, and then told to stop again once I got a BFP.  Maybe I could ask to stay on it then...?

lovekatespade

pinkmickey24:

If I were in your shoes I would definitely push for a RPL panel. My thought is what will hurt in the end other than giving you reassurance. Personally I would want to know now if there is a reason for the miscarriage that could have been prevented with such medicines as baby aspirin, etc. and know that the next time I got pregnant I could try to rest a little easier knowing that there are measures in place to try and prevent another miscarriage. 

This is my thought exactly.  I'm so sorry for your loss. 

pinkmickey24

Gregermis:

I take a baby asprin on a daily basis for joint pain (I hate tylenol and it seems to help).  The last two cycles I've been allowed to stay on it, but to stop during ER/ET/FET for a few days before and after, and then told to stop again once I got a BFP.  Maybe I could ask to stay on it then...?

I honestly don't know much about baby aspirin and am curious as to why you can't take it during ER/ET/FET. Do they tell you to stop because aspirin can thin the blood?

mnj05

Maybe you should push for the testing, at least for peace of mind and hopefully prevent any further losses if something showed up. Sorry you're experiencing this. Hugs and T&Ps!

Gregermis

pinkmickey24:

Gregermis:

I take a baby asprin on a daily basis for joint pain (I hate tylenol and it seems to help).  The last two cycles I've been allowed to stay on it, but to stop during ER/ET/FET for a few days before and after, and then told to stop again once I got a BFP.  Maybe I could ask to stay on it then...?

I honestly don't know much about baby aspirin and am curious as to why you can't take it during ER/ET/FET. Do they tell you to stop because aspirin can thin the blood?

Yeah... I think that and also they like to be as med free as possible at my clinic (which is ironic considering all the meds they put you on to begin with!)

Bethany1026

pinkmickey24:

Gregermis:

I take a baby asprin on a daily basis for joint pain (I hate tylenol and it seems to help).  The last two cycles I've been allowed to stay on it, but to stop during ER/ET/FET for a few days before and after, and then told to stop again once I got a BFP.  Maybe I could ask to stay on it then...?

I honestly don't know much about baby aspirin and am curious as to why you can't take it during ER/ET/FET. Do they tell you to stop because aspirin can thin the blood?

i was told that you cant take it before or after ER because when they go through your ovaries with the needle you could continue to bleed out and even possibly lose and ovary.

 

pinkmickey24

Bethany1026:

pinkmickey24:

Gregermis:

I take a baby asprin on a daily basis for joint pain (I hate tylenol and it seems to help).  The last two cycles I've been allowed to stay on it, but to stop during ER/ET/FET for a few days before and after, and then told to stop again once I got a BFP.  Maybe I could ask to stay on it then...?

I honestly don't know much about baby aspirin and am curious as to why you can't take it during ER/ET/FET. Do they tell you to stop because aspirin can thin the blood?

 

i was told that you cant take it before or after ER because when they go through your ovaries with the needle you could continue to bleed out and even possibly lose and ovary.

 

That makes sense and honestly right down terrifying to think about.

Gregermis-You are right on the irony in the being med free part. When you go in for ER you are full of the stim medicine you pumped your body full of and then when you leave ER you start pumping your body with even more.

farmerlynda

mnj05:

Maybe you should push for the testing, at least for peace of mind and hopefully prevent any further losses if something showed up. Sorry you're experiencing this. Hugs and T&Ps!

I agree -- it's about regret minimization, especially since you have three snowbabies left.  If it gives you peace of mind, push for the testing, and that way whatever happens with your next FET, you'll know you did absolutely everything you could!

And I also agree with Bethany -- no baby aspirin makes sense around ER because of the bleeding potential...  but I'm not sure why they wouldn't want it around ET/FET.  Also, if your body is used to a daily baby aspirin, it might actually be worse to stop it, because that's a sudden change for your body, KWIM?

Gregermis

farmerlynda:

mnj05:

Maybe you should push for the testing, at least for peace of mind and hopefully prevent any further losses if something showed up. Sorry you're experiencing this. Hugs and T&Ps!

I agree -- it's about regret minimization, especially since you have three snowbabies left.  If it gives you peace of mind, push for the testing, and that way whatever happens with your next FET, you'll know you did absolutely everything you could!

And I also agree with Bethany -- no baby aspirin makes sense around ER because of the bleeding potential...  but I'm not sure why they wouldn't want it around ET/FET.  Also, if your body is used to a daily baby aspirin, it might actually be worse to stop it, because that's a sudden change for your body, KWIM?

Yeah...  I think I didn't take it the day before, of and after my FET... I stopped it after about 5 days of stims the first time around and waited 3-4 days after ET during my fresh cycle... so I was off it quite awhile during my fresh cycle.  I do occasionally miss a day here and there otherwise. 

Aegis2005

(((hugs))) I don't have any advice, but wanted to say I'm so sorry you're going through this again.

rockpaperlove

I am all about doing whatever gives you piece of mind. I just requested testing for MTHFR only because I did not want to regret NOT doing it. I think it is best to follow your instinct and you can only benefit from further testing, whichever sort of testing it may be. The last place I want to find myself through IF, is coulda woulda shoulda in regards to increasing the odds of a happy and healthy nine months. Long story short, I say do the testing!  

glueck

Gregermis, I have no experience with this at all, but I just wanted to chime in to send you a little love. I am glad that the RE was able to make you step away from the "failure" feeling. That is a heavy burden. I think that the testing is a great idea, and thank the lord it is covered, so that is a blessing. Sounds like the next step of the plan is in place and that at least. In spite of this heartbreaking loss, you will be able to move ahead.  You are a strong lady. Hang in there.

4legsRbest

First of all, I can not believe that she said that to you. From the first second you know about your baby, it is a real thing. I don't care if you only have them for 1 day or 10 weeks. How did you not throat punch her? I know you said you are okay with it now, I obviously am not Sorry!!

As for the testing - I pretty much tell my RE the things I want if he doesn't suggest them and he always obliges me - that is one reason I am still with him. Can you tell her you want these tests? IMO if you are covered for them and have recurrent losses (which you do by medical definition) then I say go for it. I would not want to chance it either.

Big hugs to you!

delino

Personally, I want every test in the book. I don't want to go through all of this just to find out that something's wrong and we could have prevented it. As for the aspirin, my protocol includes aspirin after ER, but I have not been diagnosed with anything that would call for it.

luvboston

I think it's absurd that she doesn't want to test for anything else. Both my m/c specialists said c/p do count. You have had 3 losses and I can't believe she would put you through another FET without doing testing herself or sending you to someone. Personally I think its criminal. Maybe you should have a phone consult with someone from the Sher institute or CCRM. This is what I had done:

 

 So DH and I both got blood work as follows:

ME:
APA (IgG,IgM,IgA of aPS,aPC,aPI,aPE)
HLA DQalpha
HLA A,B,C,DQbeta
NK Activation with IVIG
RIP(Reproductive Immunophenotype)
DH:
HLA DQalpha
HLA A,B,C,DQbeta

AmCheri

I don't have any words do advice, but did want to say I'm thinking about you. Hugs. 

Whales124

I'm sorry for your loss!  I don't know anything personally about recurrent loss (never had a BFP) but I can say that my protocol includes baby aspirin the whole way through both for FET and IVF.  The nurse told me it was to help with clotting.  Good luck!

HappyIAm

pinkmickey24:

Let me start by saying once again how sorry I am for your loss. If I were in your shoes I would definitely push for a RPL panel. My thought is what will hurt in the end other than giving you reassurance. Personally I would want to know now if there is a reason for the miscarriage that could have been prevented with such medicines as baby aspirin, etc. and know that the next time I got pregnant I could try to rest a little easier knowing that there are measures in place to try and prevent another miscarriage. Good luck as you move forward and I am sending you lots of support.

Totall agree with this!!!  I am certian finding out about the MTHFR from my RPL panel was crucial for me.  I would push for the bloodwork!  Again, I am so sorry you are going through this!!!   Praying for peace and healing.

tst1998

You know me and my love of research, and having been through 2 chemical pregnancies myself, here is what I came up with (in case you are at all curious):

The thrombophilia panel makes sense if you have later losses, because blood clotting disorders have only been associated with late 1st trimester losses. Anti-phospholipid antibodies can be associated with early losses, as can anti-thyroid antibodies. So, while my RE didn't think we needed to do any testing, I asked specifically for APA and anti-TPO antibodies, which she was willing to order. I was ok with not doing the full thrmobophilia work up.

The reason they don't recommend testing until you've had three losses is because most women who have two losses will go on to have a normal pregnancy without intervention. But these are women who get pregnant on their own. We are already undergoing intervention, and already paying large amounts of money for this, so do the same guidelines really apply? Yes, we might find an abnormality that isn't a problem, but at this point I'd try anything just in case there is a problem.  That was my reasoning for asking for testing. Heck, with IVF maybe we should all get this testing done before we even start. Just in case. I don't know.

It's hard with c/p's because no one studies these. It's not that they don't count as pregnancies, they just don't fit the entry criteria for any of the studies that are out there so no one knows what to do with them.

We did do karyotyping for me and DH, but in retrospect, I wouldn't have done that unless we were going to do another fresh cycle since even if we had found an abnormality, there was nothing we could do about our last 3 embryos and I'd want to transfer them anyway.

It's hard because our RE's want to do the right thing based on the available evidence, but we want to do whatever it takes, even when it doesn't make sense. I've found Dr. L is willing to consider my requests and we've had some good discussions about what we should and shouldn't do at this point. I think it's worth a conversation now that you've had time to think about it

Good luck, sweetie. I'm sorry you are having to deal with all this. ((hugs))

joules12

It looks like you've gotten some great advice/food for thought from PP.  Sending you (((hugs))), Gregermis!

Roxie5739

pinkmickey24:

Let me start by saying once again how sorry I am for your loss. If I were in your shoes I would definitely push for a RPL panel. My thought is what will hurt in the end other than giving you reassurance. Personally I would want to know now if there is a reason for the miscarriage that could have been prevented with such medicines as baby aspirin, etc. and know that the next time I got pregnant I could try to rest a little easier knowing that there are measures in place to try and prevent another miscarriage. Good luck as you move forward and I am sending you lots of support.

Exactly this. I am sorry for what you are dealing with but looks like you are pushing for more dx and a better plan.

zookbride

pinkmickey24:

Let me start by saying once again how sorry I am for your loss. If I were in your shoes I would definitely push for a RPL panel. My thought is what will hurt in the end other than giving you reassurance. Personally I would want to know now if there is a reason for the miscarriage that could have been prevented with such medicines as baby aspirin, etc. and know that the next time I got pregnant I could try to rest a little easier knowing that there are measures in place to try and prevent another miscarriage. Good luck as you move forward and I am sending you lots of support.

 

All this. I'm so sorry Greg, its just not fair going through IF and losses. I would feel much better about being tested now rather than waiting for more losses. Why would your RE be ok with you going through another loss before they started testing? I know there is a difference in a c/p and a m/c, but you've had 3 losses regardless, so I'd push for the testing. If for anything else, you'll at least have some peace of mind going into the next pregnancy. ((hugs))

Snarling Fox

 Huge hugs for your losses. 

I would insist on the testing, especially if your insurance covers it. IF treatment is already so pricey and I would prefer to rule out anything or treat it if at all possible. Hope your RE is agreeable to doing them.  

Gregermis

tst1998:

You know me and my love of research, and having been through 2 chemical pregnancies myself, here is what I came up with (in case you are at all curious):

The thrombophilia panel makes sense if you have later losses, because blood clotting disorders have only been associated with late 1st trimester losses. Anti-phospholipid antibodies can be associated with early losses, as can anti-thyroid antibodies. So, while my RE didn't think we needed to do any testing, I asked specifically for APA and anti-TPO antibodies, which she was willing to order. I was ok with not doing the full thrmobophilia work up.

The reason they don't recommend testing until you've had three losses is because most women who have two losses will go on to have a normal pregnancy without intervention. But these are women who get pregnant on their own. We are already undergoing intervention, and already paying large amounts of money for this, so do the same guidelines really apply? Yes, we might find an abnormality that isn't a problem, but at this point I'd try anything just in case there is a problem.  That was my reasoning for asking for testing. Heck, with IVF maybe we should all get this testing done before we even start. Just in case. I don't know.

It's hard with c/p's because no one studies these. It's not that they don't count as pregnancies, they just don't fit the entry criteria for any of the studies that are out there so no one knows what to do with them.

We did do karyotyping for me and DH, but in retrospect, I wouldn't have done that unless we were going to do another fresh cycle since even if we had found an abnormality, there was nothing we could do about our last 3 embryos and I'd want to transfer them anyway.

It's hard because our RE's want to do the right thing based on the available evidence, but we want to do whatever it takes, even when it doesn't make sense. I've found Dr. L is willing to consider my requests and we've had some good discussions about what we should and shouldn't do at this point. I think it's worth a conversation now that you've had time to think about it

Good luck, sweetie. I'm sorry you are having to deal with all this. ((hugs))

Dr. H seems less willing to do testing that I ask for than Dr. L.  She said APA and ATA would be a 10wk m/c issue, not an early one (which is not exactly what I've read...)  Maybe I need to take you with me to my next appointment   My beta dropped to 153, but I need to wait until ~6wks after it's back to zero to have the APA test anyway... so maybe I can bring it up again at my SIS.

luv boston - I'm not so worried about the DQ alpha matching... if that is case we'd use a surrogate or just adopt and we're getting close to the point where we are going to make that call anyway. 

rosemary&thyme

Eff that shiiit. A loss is a loss. I don't care if it's 5w or 10w. You still had a fertilized egg that implanted in your lining. You were pregnant. My doctor did testing after two losses (one after we saw a heartbeat and one cp.) He was open to doing it but I definitely would have pushed if he was not. As you or a pp said, so much better to know what the problem is (if you can. we've had a ton of testing and have found nothing despite 3 early m/c) and address it, ESP when you're putting all of the time, money and physical & emotional stress of IVF/FET. Good luck to you and I hope you are able to find some answers

(p.s. Just a heads up that the diagnosis is "habitual aborter" which definitely isn't easy to read, esp on the tougher days.)

adoruhbul

My losses were all around 5-6 weeks when I did my repeated loss testing. He also said they were c/p's but felt the testing is even more important because losses that early are usually genetic problems or blood clotting issues or Alpha Q status, etc. which means either adding in Lovenox or doing the karyotype and subsequently CGH or PGD, possibly even intralipids.  I'd push for the testing. Any loss at 8-10 weeks is almost always a triploid, so honestly it's more needed for recurrent c/p's. 

Seagull2012

I say push for all the testing you can. Especially if it's covered by insurance. I agree - it's better to know (or rule stuff out) than just guess. I think some REs and docs think it's less invasive to not do a bunch of IF tests but i would rather have as many of them done as possible. GL! 

Mitzi Bishi

This is something I have really been struggling with lately. Those of us with MFI or IVF or nothing scenarios really have the cards stacked against us, because the likelihood of simply getting pregnant without intervention are slim to none. 

If you have a miscarriage issue on top of that chances are good you're going to run out of funds or steam before they discover it. I am so tired of that pain and heartache being trivialized for people like you (and myself).  

It's so disheartening to have failed IVFs and know that there were great blasts in there that for whatever reason didn't flourish. If even those aren't working the chances of it all working on its own feel really distant. Today my acu said I should keep trying and that I'm not being positive enough. Really? I simply responded, "you know, there are no guarantees". 

I'm considering the e.tegrity test, which is a biopsy to see if the lining takes to implanting.

Push for what you want. You truly are your best advocate and doctors are human. If I was still listening to my OBGYN we'd be wasting more time instead of simply getting my husband tested.

I hope you can find some answers!