Recurrent Miscarriage Thread

[ReadynWaiting]

I really appreciate the responses and advice. I would rather gain knowledge through people's experiences rather than a dr spewing from a textbook.
I think my rush stems from 2 places: 1. Is my age and 2. Is I want a sibling close in age for dd.
The past couple days I have been thinking that I do just need to wtt to recoup and also to start testing. My mw said I may need progesterone but I was wo dering wouldn't I have issues with my cycle if that were the case? I have textbook periods never with inconsistencies.
I have no problem getting pg just staying pg or chromosomal issues perhaps?
Time to start educating myself. I booked an appt for next thurs with an ob-gyn to get things started and hopefully get a referral to a reproductive immunologist.

 

[pinkpassion]

Yes all my testing was normal , no mutations of mthfr. But I am still on folate and baby aspirin and progesterone. They put all their recurrent pregnancy loss patients on that!!!!

 

[pinkpassion]

Ready - I had 3 losses before dd and one after followed by losing a twin in this pregnancy (but the twin likely had nothing to do with my "recurrent losses", losing a twin is very common )

 

[Creolequeen81]

Dairymomma your rainbow will come soon!! I'm in the same boat as you with people and their pregnancy announcements. Don't get me wrong I'm extremely happy for them but I only wish it was me making my announcement. As you recall I've been diagnosed with postpartum depression and I'm on Prozac so right now my goal is to get my mental health together so that when my time comes I'll be ready physically and mentally for my little one. Go on your vacation and relax don't think about anything just have fun and enjoy your time away with your DH.

 

[dairymomma]

Ready-I've had a textbook 28 day cycle and still needed progesterone. My dr says it's because you can have women who have normal progesterone levels during their cycle but their progesterone either doesn't rise normally or it drops prematurely in the first trimester so the supplements are needed for that reason. And not all doctors are textbookish. Mine is great for listening and giving anectdotal evidence. He's willing to let me do my own research and request my own testing/treatment plans (within reason of course). But if you want to know my story, here's the short version. I've had 10 miscarriages (4 blighted ovums at 8 weeks, 1 mmc at 7 weeks, 4 miscarriages at 8-9.5 weeks, and 1 m/c at 14 weeks) in the last 8 years. I've also gone to term a few times and have a DS and 2 DD as a result. Recent gene testing showed I have a gene mutation that prevents me from processing folic acid properly and can trigger clotting issues and we all feel this is my main issue since all other testing has come back normal. My next pregnancy I'll be on progesterone from bfp to 14-15 weeks, baby aspirin from bfp to 36 weeks, and I'll be on lovenox injections for the clotting stuff until at least 15 weeks (I'm not sure if I'll be on them for my entire pregnancy as I've yet to talk to my doctor about this.) We're also looking at adding steroids to my treatment plan for the first trimester too but I'm on the fence on that. I'm also on high dose methylfolate for my folic acid deficiency but I'll be on that for a lengthy time since my levels are so low at the moment and it's automatic when I get pregnant again as well. Hope this helps a little bit!

Creole-I don't know if I'll get my rainbow to be honest. I've had so much trouble in the last 8 years and having had 10 losses overall just weighs on me. We're probably going to be done after our next try no matter what the outcome is so if I miscarry once more, that rainbow won't be happening for me. I know I'm just going through my usual baby fever, 'why can't I ttc yet ' phase right now. WTT is so hard when you really want to ttc but atm, waiting is the best option for me. I'm just getting tired of waiting because it's been 7 months and I'm usually pregnant again by this point. It also doesn't help that I'm crazy hormonal right now since AF is due to come today or tomorrow (though she's been all over the map since my last miscarriage so who knows when she'll come this month...). I know not to read too much into it. It's just everything hitting at once is all. And I am really looking forward to our vacation. If it were any other year, I'd have said 'screw it. If I get pg and I'm too early, we'll just cancel our vacation plans' but I NEED to get away from it all and this vacation has been planned for the last year and a half so I'm NOT backing out now. (And to be secretly honest, I've got things planned out so that if AF cooperates-for once-and comes when I hope she will, we'll be able to do some baby making on our vacation. Who wouldn't love that right? )

 

[Creolequeen81]

Dairymomma you're right your hormones are probably all over the place right now. One thing I've learned through this is that keeping a positive outlook can help (lol I know says the one on Prozac). So I'm staying positive and I'm hoping for the best for. Hopefully your AF will cooperate and your can baby dance on you vacation!!

 

[ReadynWaiting]

Thanks dairymomma. I hope it's something common or easily detected but the way things work with me it probably won't be. I just want to be as informed as possible so I can guide the testing.

 

[NDH]

ReadynWaiting, I too had 4 MCs in under a year and we had decided to take a break both to give my body a break and to pursue testing (actually MC#4 was conceived on what was supposed to be a break too...) I had started seeing a naturopath and was being treated for a few possible underlying issues while I was undergoing my third miscarriage.
I had gotten a basic RMC panel done after my 3rd consecutive loss, but a week later found out I was pregnant again by accident.
Anyway deciding to take a break was hard, but we did feel it was for the best. I was waiting to get in with the GYN for further testing when we were in the midst of a move and I was distracted with that so lost track of my cycle and we weren't as careful as we should have been...

Spoiler

I ended up pregnant again, for the 5th time in under a year. I've had weekly acupuncture and was on baby aspirin and progesterone cream and had made some dietary changes as well. Couldn't say whether any of those things worked or not since we never got around to further testing, but I'm currently 19 weeks pregnant and everything is going great so far.

The crazy thing to me is that it took over 2 years and 1mc to conceive my first, second was conceived quickly when she was 8 months old, and then suddenly I turned into a woman who got pregnant at the drop of a hat but couldn't keep them.

Anyway I don't have any advice for you, but hope that my story might have offered you a little encouragement.

 

[ReadynWaiting]

NDH it offers me great comfort as it sounds much like my experiences. We ttc for 13 months before the 1st mmc and then the 3 following it were ntnp. 2 of which we literally dtd once in the cycle and got pg. My body has been pg (with hcg anyways) for 9 months out of 10 but no baby to hold. What I don't get is with all the blood I have had taken this year not once have I been tested for anything more than hcg. My care has been under a mw (except for the d and c's) so maybe that is why.
I did hemmourage with the last mmc so maybe I have developed a clotting disorder or maybe progesterone is the issue. I am pretty sure I have a gluten intolerance (not Celiac) or some form of inflammation that occurs when I eat it as I have many symptoms that are apparent. When I got pg with dd I had been gluten free for over a month, not sire if that was coincidence or what. I did consume gluten while pg so maybe that blows it out of the water.
I am creating my list of tests to request and inform myself of as much as possible so I can direct the care.
Did you request the progesterone cream or did the dr suggest it? Were you tested? I have read conflicting things about progesterone and baby aspirin.

 

[dairymomma]

Just a quick side note on the gluten sensitivity thing you are wondering about...If you have thyroid issues, gluten can be a trigger for that. Also on the blood draws, it's actually not that surprising that you haven't had any testing done. Pregnancy throws off alot of the test results because pg hormones do all sorts of things to your body. For example, if you had a progesterone level or TSH (thryoid function) done, it would only show what's happening with those numbers while you are pregnant and would say nothing about what's going on when you aren't pg. Clotting disorder testing can only be done if you've waited a certain amount of time after a pregnancy because here again, you can get false answers with pg hormones racing about. Also, I'm not sure how it is over there, but my regular doctor didn't do more than just a basic blood test panel (TSH and rH factor pretty much) after my 2nd loss. It wasn't until I saw my specialist, who understood more of what I needed to have tested, that I had more labs done. It's possible your midwife may not know much about RMC testing and you'll need to talk to someone who is more versed in that area.

 

[ReadynWaiting]

Thanks Dairymomma. I am going to see an ob-gyn tomorrow to do the initial bloodwork. If it comes back as unexplained then I will request a referral to a reproductive immunologist.
My hcg is dropping slowly. I haven't had any blood taken but tests are still positive and not lightening very fast. My 1st mc took 9 weeks to drop to 0. I hope this doesn't happen again as I don't want to have to wait months just to do the testing.

 

[dairymomma]

FX your hormones balance out sooner and your hpts go negative quickly. It usually takes me 2-3 weeks to get a bfn but I've had it be anywhere from 9 days to almost 4 weeks.

 

[NDH]

NDH it offers me great comfort as it sounds much like my experiences. We ttc for 13 months before the 1st mmc and then the 3 following it were ntnp. 2 of which we literally dtd once in the cycle and got pg. My body has been pg (with hcg anyways) for 9 months out of 10 but no baby to hold. What I don't get is with all the blood I have had taken this year not once have I been tested for anything more than hcg. My care has been under a mw (except for the d and c's) so maybe that is why.
I did hemmourage with the last mmc so maybe I have developed a clotting disorder or maybe progesterone is the issue. I am pretty sure I have a gluten intolerance (not Celiac) or some form of inflammation that occurs when I eat it as I have many symptoms that are apparent. When I got pg with dd I had been gluten free for over a month, not sire if that was coincidence or what. I did consume gluten while pg so maybe that blows it out of the water.
I am creating my list of tests to request and inform myself of as much as possible so I can direct the care.
Did you request the progesterone cream or did the dr suggest it? Were you tested? I have read conflicting things about progesterone and baby aspirin.

I cut out gluten as well after my third (i think) mc as I strongly suspect an autoimmune condition. My naturopath thinks thyroid but my go wouldn't test for antibodies as my tsh came back in the normal range. But I do have a large family history of celiac and other autoimmune disorders, and as gluten is triggering for many autoimmune disorders it makes sense to eliminate it and certainly will do no harm. I've "cheated" a lot cause its hard when I don't know if its actually making a difference but I've been good for a while now

I purchased the progesterone cream online myself - my gp didn't feel it necessary to test mine as she didn't think I really had a problem and it was "just bad luck"... Its wild yam derived natural progesterone cream.

Yep definitely lots of conflicting information on progesterone and baby aspirin. I did a lot of research on both though and felt they were both worth the risk for me (though I have since discontinued both and don't think I would opt for baby aspirin again in future)

I did have some RMC testing done but I don't trust the results at all as I was right on the heels of a miscarriage and was pregnant again very soon after.

 

[ReadynWaiting]

I had one of the lovely ladies on a thread I am on suggest checking out a webinar located at www.haveababy.com. If any of you are looking for some info on RPL this site is fantastic. The dr is very knowledgeable and informative. I am going to use his recommendations for testing and talk to my dr about all of them. From what I understand after 3+ miscarriages in a row the most common reason is Natural Killer cells destroying each pregnancy that can eventually lead to infertility. It all sounds very scary. Has anyone been Dx with autoimmune or alloimmune issues?

 

[Hope39]

Ready - I was diagnosed with autoimmune thyroid disease and elevated natural killer cells xx

 

[dairymomma]

Getting NK cell testing done can be an issue for some though. I'm in the States and it's not a very well known reason for m/c nor do some doctors even believe it can be a cause so there's not alot of testing for it. I've never been checked for nk cells but I've been checked for other autoimmune stuff like lupus and APS with negative results. However, my doctor is very open-minded about my RMC issues (even if he doesn't think nk cells are an issue), and has given me alot of leeway with testing and treatment options so if I wanted steroids to be added to my treatment plan, I likely would be allowed to try them.

 

[ReadynWaiting]

Ready - I was diagnosed with autoimmune thyroid disease and elevated natural killer cells xx

So what is the course of action when a bfp is detected or prior?

 

[ReadynWaiting]

Getting NK cell testing done can be an issue for some though. I'm in the States and it's not a very well known reason for m/c nor do some doctors even believe it can be a cause so there's not alot of testing for it. I've never been checked for nk cells but I've been checked for other autoimmune stuff like lupus and APS with negative results. However, my doctor is very open-minded about my RMC issues (even if he doesn't think nk cells are an issue), and has given me alot of leeway with testing and treatment options so if I wanted steroids to be added to my treatment plan, I likely would be allowed to try them.

I think my dr is similar. I am going to discuss this testing as well as a few others to get as much info as possible.

 

[hmmohrma]

Hey Ladies, I am a week past spotting (that turned to red blood and clots about two hours later). This is loss # 3 for us, and we have now been referred to an endocrinologist. My ob wants me to test again tomorrow to check levels before we see the new doctor in two weeks. I am excited to be moving on to a new step rather than continuing to go through easily conceiving and then losing the pregnancies after 5 weeks, but I'm tired and obsessing at the same time. I am 31 and I know I have time, but we waited on purpose to be in a good place to parent and ended up with this problem. I have had basic thyroid, clotting, and hormone tests, and all have been normal. I'm guessing the endocrinologist will begin with genetic mapping, but I don't know for sure. I just need to talk to some people in a similar situation rather than retell my story to family and friends who have all had easy (often unplanned) pregnancies.

Have any of you been to fertility endocrinologists before? How did your first appointment go?

 

[dairymomma]

I haven't been to an endocrinologist but I was referred to an OB/GYN who has a speciality in infertility and miscarriage issues after my 3rd consecutive loss. My first appt with him was just an informational one. He took down a detailed family health history from both DH and myself, wanted more info on when/how my miscarriages were occurring, and ordered up a quick thyroid test to double check my numbers. He didn't go more in depth because he felt that my problems (at that point) stemmed from progesterone deficiency as my tests to that point had come back normal and I was losing my pregnancies around 8-9 weeks.

I'm guessing your endocrinologist will likely want a health history from both you and your OH, go over your test results, and get an idea of where you need to start looking from here. You may even have some more blood tests done then depending on how in depth your previous tests have been. It all depends on the doctor.

As for me, my story is 10 m/c overall, 11 angel babies, and 3 rainbow children in the last 8 years. I was initially diagnosed with progesterone issues and prescribed progesterone supplements & baby aspirin but after my miscarriages started happening sooner and unexplained bleeding started happening more often in my first tri, we started looking into clotting disorders. I was recently diagnosed with the MTHFR C677T gene mutation which prevents me from processing folic acid properly and is likely the biggest source of my RMC problems. My current treatment plan is progesterone from bfp to 14 weeks, baby aspirin from bfp to 36 weeks, and lovenox injections from bfp to ? (We haven't discussed when I'll come off the blood thinners, just that I'm going to go on them. I'm guessing I'll stop them around 14-15 weeks.)