my WTF, need advice (m/c vets)

kthappy76 · January 2011

My WTF was yesterday and was disappointing. My RE doesn't believe in immunology and called it "voodoo" and only agreed to test me for antiphospholipid antibodies (and that took some serious cajoling). He thinks our m/c was "bad luck", well isn't that an understatement. I'm not sure now what to do.

I think I'm still going to make an appt. with the RI my acu recommended and see what she has to say. I'd like to cycle again with our 2 FE's ASAP, but don't know whether it's worth delaying at all to pursue this or whether we just cycle and see what happens. If it doesn't work out (either BFN or m/c), then we'd definitely take time to do more testing before doing another fresh cycle (likely w/a new RE)

I'm stuck between feeling like I'm being over zealous and wanting to do our due diligence, if you KWIM... WDYT?

kekis · January 2011

m/c vet at your service. (Finally, a post I can answer around here.) I think a second opinion is valid. If your RE seriously called testing "voodoo", then I would DEFINITELY seek advice somewhere else. You need answers, and while immunology testing might not give you what you need, it is something you need to determine. If your insurance covers it, then why not? Keep knocking on doors until you get answers. You need and deserve them!

coconut711 · January 2011

I'm so sorry for your loss. I don't post here much but I lurk. I also had a m/c last year that came back as a normal male kayotype. I insisted and my doctor agreed to do a full immunologic work up. We found out that I have a hetero MTHFR mutation (doc doesn't think it's a risk factor) and elevated NK cells. I know that the medical community split on whether NK cells cause m/c's. But my doctor has told me about several of his patients with multiple losses who finally tried Intralipid infusions and went on to have successful pregnancies. If you can add Intralipid or IVIG therapy, it really can't hurt! I would rather know that all my bases are covered!

Best wishes to you.

petite chouette · January 2011

I would also agree that you should seek another opinion. How is RPL/immunological testing "voodoo?" Ugh.

Honestly, I would rather be armed with too much knowledge instead of not enough, you know? I would not have known I had a blood clotting disorder and a particular antibody that can possibly cause fetal heartblock had I not insisted on additional testing.

((Hugs))

Edwina.McDunnough · January 2011

I totally know what you mean about wanting to exhaust your diagnostic options (which would be $, possibly indicate nothing concrete, and tiring as heck) and doing what is medically necessary and informative.

A second opinion can't hurt. Ditto Kekis.

Personally, I love my RE, and looking for options outside of my clinic is particularly exhausting and confusing for me. I don't know if I'm all down and beat up, or if it's information overload, or that I'm medical choices even though I'm not a doctor. I'm not trying to scare you, I'm just saying I'm overwhelmed and if you are, you're not alone.

itsmevkb · January 2011

I hope you don't mind my responding.

I too have talked to numerous docs who consider NK cell/immune issues to be voodoo science. My answer to that is that until someone can explain why I've lost two babies I will consider just about anything and everything since there has to be a reason. Saying it's bad luck just isn't good enough for me.

I find it appalling that doctors expect women to wait until they have lost muliple babies before they will do testing. At the very least you should be tested for all the "normal" issues and then go from there. Definitely keep pushing your RE and perhaps even ask your gyn if they would be willing to do the testing. If they won't get the testing done elsewhere (with a reproducitive immunologist) and then you can still do the FETs with your RE. The RE who did my treatments didn't buy into NK cells being an issue but she only managed my cycles, then I had Dr. Coulam manage the immune/loss issues. When you do get pregnant again some of the tests need to be re-run as the pregnancy can trigger APA and NK cell issues.

patchen30 · January 2011

Correct me if I'm wrong, but genetic testing from your m/c showed no chromosomal or genetic abnormalities, right? I would think that the next step would be to do a full RPL work-up to look for Factor V Leiden, MTHFR, anti-phospholipid/cardiolipid, etc. That would be seperate from the immunology stuff though (NKCs, ANAs, etc. - my RE doesn't believe in this either), and a saline u/s or hysteroscopy. Since they ruled out chromosomal stuff, I would think they'd want to try and find out what the issue was - anatomical, blood clotting, etc...

Blessed1010 · January 2011

This exact thing happened to me with my RE at Northwestern. I immediately made the decision to meet with Dr. Mary Stephenson at the University of Chicago. She runs the Recurrent Pregnancy Loss Program at U of C. I wasn't switching RE's, I was just looking for answers elsewhere. I, too, think you should do the same.

https://www.uchospitals.edu/specialties/obgyn/pregnancy-loss/

I have also heard of a Dr. by the name of Joanne Kwak-Kim. I have no experiece with her, but I have heard good things about her.

https://www.rosalindfranklin.edu/RMC/tabid/2651/Default.aspx

If AF isn't willing to run the tests, I think you should find someowe who is willing. You may or may not get any answers, I didn't. Nevertheless, I tried.

Also, in response to your post about IVF coverage, my husband works at SNR Denton and the coverage is pretty good. Max out of pocker per calendar year is $3000. So, we won't spend more than $3000 in 1, 2, 3, 4 IVF's if done within that one year. There is a max of 4 IVF's, unlimited IUI's, and if I get pregnant I get an additional 2 more IVF attempts for a sibling or siblings.

HTH

kthappy76 · January 2011

*Blessed*:

I have also heard of a Dr. by the name of Joanne Kwak-Kim. I have no experiece with her, but I have heard good things about her.

Thanks hon. This the RI that was recommended to me. I've heard good things about her on the m/c/PL board too.

kthappy76 · January 2011

patchen30:
Correct me if I'm wrong, but genetic testing from your m/c showed no chromosomal or genetic abnormalities, right? I would think that the next step would be to do a full RPL work-up to look for Factor V Leiden, MTHFR, anti-phospholipid/cardiolipid, etc. That would be seperate from the immunology stuff though (NKCs, ANAs, etc. - my RE doesn't believe in this either), and a saline u/s or hysteroscopy. Since they ruled out chromosomal stuff, I would think they'd want to try and find out what the issue was - anatomical, blood clotting, etc...

They only did basic chromosomal testing on the baby, no genetics, so it's possible that this was the cause of the m/c, but we'll never know. I also assumed the next step would be testing, but my RE was not interested in doing any of that when I asked about these specific tests. I think that's just not what he does/believes in. He does primarily IVF and is very good at getting ppl pg, but that's as far as it goes, he's not curious as to why I lost the baby.

mamabear7 · January 2011

patchen30:
I would think that the next step would be to do a full RPL work-up to look for Factor V Leiden, MTHFR, anti-phospholipid/cardiolipid, etc. That would be seperate from the immunology stuff though (NKCs, ANAs, etc. - my RE doesn't believe in this either), and a saline u/s or hysteroscopy. Since they ruled out chromosomal stuff, I would think they'd want to try and find out what the issue was - anatomical, blood clotting, etc...

I'm with Patchen on this. I would call back today and talk to the nurse. Tell her you want to have an RPL work up done. She may say the doctor doesn't think its necessary, and if she does, then you should say you want it anyways. They should be willing to accomdate. They should be sympathetic to you wanting to be comfortable before moving on to an FET. GL

kthappy76 · January 2011

itsmevkb:

I hope you don't mind my responding.

Thanks hon. I never mind you responding.

itsmevkb:

...I find it appalling that doctors expect women to wait until they have lost muliple babies before they will do testing.

Yeah, especially when you aren't even able to get pg on your own and have to pay someone thousands of dollars each time to help you. I feel like there should be a different loss protocol for ppl doing ART.

itsmevkb:

The RE who did my treatments didn't buy into NK cells being an issue but she only managed my cycles, then I had Dr. Coulam manage the immune/loss issues.

My RE mentioned Dr. Coulam by name when he was railing again RI's that will "test you for 600 things and something always comes back positive". But I've heard really great things about her.

babylove0511 · January 2011

kepis:
I think a second opinion is valid. If your RE seriously called testing "voodoo", then I would DEFINITELY seek advice somewhere else. You need answers, and while immunology testing might not give you what you need, it is something you need to determine. If your insurance covers it, then why not? Keep knocking on doors until you get answers. You need and deserve them!

i agree with this, good luck hun

patchen30 · January 2011

kthappy76:

patchen30:
Correct me if I'm wrong, but genetic testing from your m/c showed no chromosomal or genetic abnormalities, right? I would think that the next step would be to do a full RPL work-up to look for Factor V Leiden, MTHFR, anti-phospholipid/cardiolipid, etc. That would be seperate from the immunology stuff though (NKCs, ANAs, etc. - my RE doesn't believe in this either), and a saline u/s or hysteroscopy. Since they ruled out chromosomal stuff, I would think they'd want to try and find out what the issue was - anatomical, blood clotting, etc...

They only did basic chromosomal testing on the baby, no genetics, so it's possible that this was the cause of the m/c, but we'll never know. I also assumed the next step would be testing, but my RE was not interested in doing any of that when I asked about these specific tests. I think that's just not what he does/believes in. He does primarily IVF and is very good at getting ppl pg, but that's as far as it goes, he's not curious as to why I lost the baby.

Hm, does the basic chromosomal testing not dx all chromosomal issues possibly? From what I understand >60% of all 1st tri m/c are chromosomal. If your RE believes that was the case for you, or that it was some other genetic issue (DNA), it would explain why he doesn't want to do any more testing. For example my m/c came back w/ triploidy and as a result he didn't want to do RPL testing. Also, usually clotting-related m/c happen later in pg - like 2nd tri.

As far the immunology stuff...I think you're hard-pressed to find a lot of REs who buy into it. There seem to be a select handful - SIRM, Kwak-Kim, Dr. B. on Long Island, etc.

That said I totally understand why you want to look for answers. At the least if I were you I'd want to do RPL since you don't have a definitive reason for m/c.

kthappy76 · January 2011

patchen30:

Hm, does the basic chromosomal testing not dx all chromosomal issues possibly? From what I understand >60% of all 1st tri m/c are chromosomal. If your RE believes that was the case for you, or that it was some other genetic issue (DNA), it would explain why he doesn't want to do any more testing. For example my m/c came back w/ triploidy and as a result he didn't want to do RPL testing. Also, usually clotting-related m/c happen later in pg - like 2nd tri.

As far the immunology stuff...I think you're hard-pressed to find a lot of REs who buy into it. There seem to be a select handful - SIRM, Kwak-Kim, Dr. B. on Long Island, etc.

That said I totally understand why you want to look for answers. At the least if I were you I'd want to do RPL since you don't have a definitive reason for m/c.

The chromosomal testing just showed how many there were and whether they were intact and we had 46 "normal" XX (w/no maternal contamination). This does not rule out gene deletions, as they are little bits on the chromosomes themselves, but it rules out major chromosomal deletions/triploidies, etc. There was not any testing done on us for genetic issues. He doesn't have a theory on what caused it, and honesty isn't interested in finding out. That is the disconnect, as I'd like to know if there is something going on, so that we can potentially avoid losing more babies before asking more questions.

patchen30 · January 2011

kthappy76:

patchen30:

Hm, does the basic chromosomal testing not dx all chromosomal issues possibly? From what I understand >60% of all 1st tri m/c are chromosomal. If your RE believes that was the case for you, or that it was some other genetic issue (DNA), it would explain why he doesn't want to do any more testing. For example my m/c came back w/ triploidy and as a result he didn't want to do RPL testing. Also, usually clotting-related m/c happen later in pg - like 2nd tri.

As far the immunology stuff...I think you're hard-pressed to find a lot of REs who buy into it. There seem to be a select handful - SIRM, Kwak-Kim, Dr. B. on Long Island, etc.

That said I totally understand why you want to look for answers. At the least if I were you I'd want to do RPL since you don't have a definitive reason for m/c.

The chromosomal testing just showed how many there were and whether they were intact and we had 46 "normal" XX (w/no maternal contamination). This does not rule out gene deletions, as they are little bits on the chromosomes themselves, but it rules out major chromosomal deletions/triploidies, etc. There was not any testing done on us for genetic issues. He doesn't have a theory on what caused it, and honesty isn't interested in finding out. That is the disconnect, as I'd like to know if there is something going on, so that we can potentially avoid losing more babies before asking more questions.

I think absent any real answer re: chromosomes or genetics then, I would want to have RPL testing and a hysteroscopy and/or saline u/s. That stuff is not controversial, so I don't know why your RE wouldn't want to do it. The immunology (aside from APAs, anti-cardiolipid) is a whole other can of worms.

vanessagorc · January 2011

kthappy76:

patchen30:

Hm, does the basic chromosomal testing not dx all chromosomal issues possibly? From what I understand >60% of all 1st tri m/c are chromosomal. If your RE believes that was the case for you, or that it was some other genetic issue (DNA), it would explain why he doesn't want to do any more testing. For example my m/c came back w/ triploidy and as a result he didn't want to do RPL testing. Also, usually clotting-related m/c happen later in pg - like 2nd tri.

As far the immunology stuff...I think you're hard-pressed to find a lot of REs who buy into it. There seem to be a select handful - SIRM, Kwak-Kim, Dr. B. on Long Island, etc.

That said I totally understand why you want to look for answers. At the least if I were you I'd want to do RPL since you don't have a definitive reason for m/c.

The chromosomal testing just showed how many there were and whether they were intact and we had 46 "normal" XX (w/no maternal contamination). This does not rule out gene deletions, as they are little bits on the chromosomes themselves, but it rules out major chromosomal deletions/triploidies, etc. There was not any testing done on us for genetic issues. He doesn't have a theory on what caused it, and honesty isn't interested in finding out. That is the disconnect, as I'd like to know if there is something going on, so that we can potentially avoid losing more babies before asking more questions.

I totally agree w Patchen's previous post about the testing, I would want those too.

My mc was correct with the chromosomes too. I was able to have the additional testing (through the D&C) and our mc was due to a genetic/dna problem.

My old clinic, and my new one, don't believe in the immune issue testing either. BUT they did do all of the tests that Patchen suggested.

If you really feel strongly, and there is a disconnect...I would prob get a 2nd opinion. GOOD LUCK.

JnA2009 · January 2011

This article talks a little about how immunology may not be a major factor in losses-

https://molehr.oxfordjournals.org/content/16/12/886.full.pdf+html

It's most applicable to those with multiple m/c's/ivf failures not also diagnosed with mthfr, clotting factor issues, etc. It provides some explanations as to why even after several losses that many women are able to carry to term in the future. It also mentions the possible therapeutic benefit of an endometrial biopsy (not just for beta integrin testing), but that the biopsy itself may be therapeutic.

If you do a google scholar search for "local injury to the endometrium and pregnancy rates" there are several interesting abstracts:

https://scholar.google.com/scholar?hl=en&q=local+injury+to+endometrium+and+pregnancy+rates&as_sdt=0,10&as_ylo=&as_vis=0

eta- i personally would make a consult appt with a new re and get their take on things. before a 2nd ivf i'd get as much testing as possible to rule out possible issues.

katerena · January 2011

I'm sorry sweetie. I would agree, a second opinion might help. I also am a big believer in breaks from treatment, it just helps give you some downtime.

LaneCA · January 2011

hmmm....it's a tough call. Personally, I would probably do some research on my own (post on Dr. Braverman's site...ask some questions...read Dr. Beers' book) and see if you believe in immune issues. If so, then you have options to get tested and treated (if need be). Once I read Dr. Beers' book, it clicked for me.

There are some REs that don't believe in immune issues, some that believe in it but do not believe in the current treatments (ie: not enough studies), and then others who believe in it and currently treat for it.

I'm so sorry you even have to be worrying about all of this Huge (((hugs)))?

hollymichael · January 2011

patchen30:
Correct me if I'm wrong, but genetic testing from your m/c showed no chromosomal or genetic abnormalities, right? I would think that the next step would be to do a full RPL work-up to look for Factor V Leiden, MTHFR, anti-phospholipid/cardiolipid, etc. That would be seperate from the immunology stuff though (NKCs, ANAs, etc. - my RE doesn't believe in this either), and a saline u/s or hysteroscopy. Since they ruled out chromosomal stuff, I would think they'd want to try and find out what the issue was - anatomical, blood clotting, etc...

These are my thoughts exactly.

patchen30 · January 2011

JnA2009:

It also mentions the possible therapeutic benefit of an endometrial biopsy (not just for beta integrin testing), but that the biopsy itself may be therapeutic.

If you do a google scholar search for "local injury to the endometrium and pregnancy rates" there are several interesting abstracts.

FWIW, my RE doesn't believe that injury to the endometrium increases implantation. He pioneered co-culture at Cornell and has done thousands of them, and co-culture involves an endometrial biopsy the cycle before IVF. He doesn't think there are increased rates of pg due to the co-culture biopsy itself. Not saying he's right, just adding another opinion to the pot.

theworms · January 2011

i would push for RPL, clotting testing and a hysteroscopy.

if you want to pursue immune testing i would do it, it can't hurt and i always feel better when i've exhausted all possibilities.

((HUGS))

PoeticJustice · January 2011

theworms:
i would push for RPL, clotting testing and a hysteroscopy.

if you want to pursue immune testing i would do it, it can't hurt and i always feel better when i've exhausted all possibilities.

((HUGS))

Yes

JnA2009 · January 2011

patchen30:
JnA2009:

It also mentions the possible therapeutic benefit of an endometrial biopsy (not just for beta integrin testing), but that the biopsy itself may be therapeutic.

If you do a google scholar search for "local injury to the endometrium and pregnancy rates" there are several interesting abstracts.

FWIW, my RE doesn't believe that injury to the endometrium increases implantation. He pioneered co-culture at Cornell and has done thousands of them, and co-culture involves an endometrial biopsy the cycle before IVF. He doesn't think there are increased rates of pg due to the co-culture biopsy itself. Not saying he's right, just adding another opinion to the pot.

Thanks... I've had 6 m/c all prior 7w (natural cycles) and endo removed a few weeks ago. All rpl tests were normal. Ivf #1 will be in late Feb, so when I came across the 6 or so studies that showed a benefit I figured it would be worth trying just in case. Going to talk to my re next week.

eta- I actually wasn't referring to the benefit of biopsy with co-culture, but the potential benefit of the local injury to the endometrium from the actual biopsy. Regardless, the co-culture idea is interesting. I'll ask him what he thinks next week.

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