Recurrent Miscarriage Thread

[newlywedtzh]

HI Ladies!

I was wondering everyone's thoughts were on going down the hollistic route for RMC or any success stories? Any info on progesterone cream?

I had my rainbow DD 19 months ago thanks to clomid, folgard (MTHFR Atype), 400mg/progesterone and baby aspirin.

I take methylfolate daily for the MTHFR. A lot has changed in two years since trying for #1, diet (dairy free and eat organic/whole foods mostly now), lifestyle (I'm a SAHM), been off BC for 3+ years now, am aware of my MTHFR mutation, and try to live a more hollisitic/clean lifestyle. Been reading and listening to podcasts about natural fertility lately and it has piqued my interest and was wondering what everyone's thoughts were here since we are somewhat in a weird limbo area.

Also any information on nursing through a second pregnancy with a history of RPL? Are we technically considered "high risk"? Has anyone known someone with a history of RPL to nurse through a second pregnancy successfully?

p.s. I just turned 30 if thats at all useful.

Thank you for any input!

 

[QueenofChaos]

Queen, sorry, I just popped in and saw some of your posts. My thinking is, your GC's last loss was genetically normal, correct? Usually, that would indicate that the problem lies with the carrier so she is the one that needs testing. What has she already had checked?

Tests on our little lost ones have not come back yet, so we don't know the loss was genetically normal. Our own 6th MC, 11 years ago was called genetically normal, FWIW.

Right now the focus is on whether dh or I have a translocated chromosome or something like that. Yes, it's possible that our GC has developed some kind of problem in the 10 years since her easy births. We won't rule that out.

Regarding her testing, it was basically the normal testing a GC undergoes to verify she's healthy enough to carry. As far as i know she had STD testing, the hysteralsalpingogram, & hormone levels.

 

[hopeful23456]

queen - I was 36 when I had the twins, i'm 40 now and would possibly still like more one day (i'm recently divorced so who knows worrying about the time issue sucks.
will be good to get karyotype results and the chromosomal test results too. would be nice if next time they give weekly scans, starting at BFP. then you can see if/when the heart rate slows down.
was the GC on lovenox, prednisone and progesterone? (or anything)?

 

[QueenofChaos]

queen - I was 36 when I had the twins, i'm 40 now and would possibly still like more one day (i'm recently divorced so who knows worrying about the time issue sucks.
will be good to get karyotype results and the chromosomal test results too. would be nice if next time they give weekly scans, starting at BFP. then you can see if/when the heart rate slows down.
was the GC on lovenox, prednisone and progesterone? (or anything)?

Lupron to prohibit ovulation. Estradiol, though not sure what for.
Progesterone, *vivelle* and pre-natals from TTC -> 12 weeks was the plan...

 

[hopeful23456]

huge hugs too by the way, I read back and your twin loss was so recent. hoping your test results come back soon and provide a reason. RPL is one of the worst things we can go through I think

 

[QueenofChaos]

huge hugs too by the way, I read back and your twin loss was so recent. hoping your test results come back soon and provide a reason. RPL is one of the worst things we can go through I think

It was shocking when we found out. Then painful and depressing. Got out of town for a few fun days and that wasn't so bad. Now, back at home, waiting on news (our genetic tests and the tissue tests) we're both feeling pretty glum. Our expectation is inconclusive news, which would be the worst. Bad news we can get some closure and/or make a plan. Treatment. 3rd-party donor. Something.
Anyone else feel like nothing can go completely right for them? That's how we feel. We'll never figure it out.

 

[dairymomma]

Hopeful-whereabouts in MN are you and where was that clinic you went to? I'm about an hour east of Fargo (near Detroit Lakes) and I'm currently half seriously shopping around for a new fertility doctor as my current one-though wonderful-has pretty much said I've stumped him. He's willing to work with another doctor though so I'm looking for someone else who may be more knowledgable with genetics and clotting issues. I do see a hematologist next week but I am almost certain there is a genetic link to all this and I'm not sure how much he'll know about genetics.

QOC-Yeah, I've been feeling like nothing can go right for me too. I'm hoping the hematologist will be able to help. If nothing else it's a new viewpoint looking at my problems and history so maybe he'll catch something we've missed? FX we both get news that helps us out, right?

 

[hopeful23456]

Dairy- OGI (obstetrics, gynecology and infertility) in Edina, Dr Rice (female)

 

[petitpas]

Hopeful-whereabouts in MN are you and where was that clinic you went to? I'm about an hour east of Fargo (near Detroit Lakes) and I'm currently half seriously shopping around for a new fertility doctor as my current one-though wonderful-has pretty much said I've stumped him. He's willing to work with another doctor though so I'm looking for someone else who may be more knowledgable with genetics and clotting issues. I do see a hematologist next week but I am almost certain there is a genetic link to all this and I'm not sure how much he'll know about genetics.

QOC-Yeah, I've been feeling like nothing can go right for me too. I'm hoping the hematologist will be able to help. If nothing else it's a new viewpoint looking at my problems and history so maybe he'll catch something we've missed? FX we both get news that helps us out, right?

Dairy, I can't remember, you were just on a small dose of steroids, right? Maybe my experience can help.

This is what my specialist said to me once: the clotting (I was a known clotter even before falling pregnant) is a red herring! It is already treated with heparin and aspirin. Just in case, we will up the heparin and keep me in a higher anti x-a range (anti x-a is what is affected by heparin so that's what you test for). BUT, there is something else, and it is probably an immune issue.

I went to see a haematology professor in London who was of a similar opinion. He also thought I might have an untestable version of antiphospholipid syndrome. All covered by the aspirin and heparin regime, though.

So what next? We threw a strong dose of steroids at my next pregnancy, too!

If I remember correctly, your dose was only 10mg/day? Would you consider taking more? 25 or even 40mg?

I know you are keen to find out more about your uncle's clotting issues but even if you do (new tests are constantly being developed) what is the treatment? Aspirin and heparin. The only change you can make is to your target clotting range and ask for it to be checked every four weeks so your dose can be adjusted to fit.

Right, that's my 2p on the subject sorry to see you are still here waiting for your next baby I hope it won't be long now

 

[dairymomma]

Hopeful-hmmm that's a bit far for me to go. It'd be about 4.5 hours. Guess I'll just stick with seeing the hematologist in Fargo and maybe I can get referred to a reproductive specialist through him. But thanks for the info.

Petit-I haven't been on steroids at all yet and my OB won't prescribe them until I talk to the hematologist but I'm looking at getting a new viewpoint because the more we find out about my uncle's genetic malfunctions/disorders and the possible repercussions for me, the more I feel I need to talk to someone who has a bit more background in genetics and/or reproductive medicine. But steroids are on my 'Must Have' list for the next go round because I want to know I've tried everything I can before throwing in the towel. So far, I know I'll be on progesterone (probably 200mg twice a day), baby aspirin, heparin injections, and high dose folate.

 

[QueenofChaos]

Latest and greatest: chromosomal test on the twin boys came back normal.
Now dh and I wait for our genetic tests to come in. Feels like it's taking forever, though it's only been 3 full business days (gave blood last Friday).
Anybody know how quickly the test can go? They're looking for translocations, mainly, I believe.
Feels like waiting for our sentencing at a capitol offense trial.

On the positive side, we ruled-out some obvious chromosomal abnormality as the cause of the MC. Unfortunately, that does little to guide us to discovering the true cause. Kinda hoping that our genetics test reveal something...

 

[blueblue]

Queen, I just looked up the clinic where we got our karyotyping tests and it says there's a target of 18 working days, I can't remember how long exactly our wait was. Hope you get some answers, sorry it's so hard x

Dairy x

 

[Trying4first1]

Well ladies.
My karyotyping results are now back. Also normal. Just don't understand what is wrong as all tests are clear?
Queen of chaos big hugs to you so frustrating isn't it.

 

[Hope39]

Well ladies.
My karyotyping results are now back. Also normal. Just don't understand what is wrong as all tests are clear?
Queen of chaos big hugs to you so frustrating isn't it.

Trying what tests have you had Hun . A lot of people think they have had all the tests possible when actually they haven't , they've just had the very basic tests that the NHS offer

Xx

 

[Trying4first1]

Hi hope
If I am honest I do not know. I have had all NHS tests and had some extras as clotting issues run in the family. What they are exactly I do not know.
If I asked for them would they send them all too me? X

 

[Hope39]

Hi hope
If I am honest I do not know. I have had all NHS tests and had some extras as clotting issues run in the family. What they are exactly I do not know.
If I asked for them would they send them all too me? X

I would think so Hun. I've just remembered, is it your consultant that doesn't agree with mr Shehata??

he is definately worth seeing on the NHS, can you not ask your gp to refer you x

 

[petitpas]

I agree with hope, you need to take another look at what you have been tested for. Normal karyotyping of the foetus means there is an as yet untreated problem with the woman carrying the pregnancy.

Trying, maybe you can request a meeting with your GP and take a notebook. Ask what clotting tests were done, antiphospholipid syndrome, FULL thyroid panel, day 3/21 hormones, scan for PCOS/uterine abnormalities, full blood count. Once all those have been done and are considered in the normal range (double check thyroid panel as normal normal range is not entirely the same as normal for fertility range) you can ask about the following: progesterone prescription just in case (doesn't harm, could help), daily baby aspirin. Try and find yourself a doctor who will prescribe immune treatment. That's the next step after all the above tests have come back normal.

Queen, the same goes for your GC.

Urgh, I remember getting the test results for my normal babies. It's a bit gutwrenching, isn't it? Especially when you see the gender . Those little babies did not die in vein, though. Their results are a vital clue in how to treat you from now on so that your next pregnancy is not lost

 

[hopeful23456]

queen - I think my karyotype testing took 2 weeks. so heartbreaking the testing was normal, at least now you know but still!

 

[QueenofChaos]

Normal karyotyping of the foetus means there is an as yet untreated problem with the woman carrying the pregnancy.

I'm sure you have good reasons for this claim, but it makes me wonder why our dr. was pretty dismissive of us even getting the lost twins tested (said the chances of it revealing meaningful, helpful information were very low) and by contrast insisted that the important tests for us are the karyotype tests (of ourselves) that we're waiting on now. Meaning, he believes there could be a problem with us even though the twins looked normal. (And our sixth MC, back 10 or so years ago also looked normal).
How could that be? Is there some kind of condition that effects the actually pregnancy, as a whole, that is genetically caused by one of the parents, but which does not manifest in an abnormality in the child?

We aren't ruling out some issue with our GC, even though she's had two easy births herself and will ask her about any testing and treatment that at all makes any sense.

**Our geneticist did say that, given the normal karyotype of multiple MCs for us, that she expects our own karyotypes will be normal**

 

[dairymomma]

Queen-I'm not sure if there is a condition but it very well could happen I'm guessing. I'm no help as I'm not a reproductive doctor but it's frustrating not having answers isn't it?

AFM-I just got home from the hematologist. He was rude, blew off most of my autoimmune and other genetic mutation concerns, I didn't like him all that much, but he is taking my MTHFR seriously and is testing me for more than just the basic clotting panel I've already had. We should have the results in about a week and I'll know more then but as of right now, we have a game plan and we can start ttc again. Progesterone from bfp to 14 weeks, baby aspirin and prescription folate from bfp to delivery, lovenox injections from bfp to 35 weeks, and heparin injections from 35 weeks to near/delivery. (normally they would switch me over to heparin at 37 weeks but I've had all three of my kids at 37-38 weeks so he wants me on it sooner) So all in all, I'm left feeling like 'meh'. Good that he's looking into more clotting stuff but GRRR that he won't let me take steroids like I so dearly want to try.