TTC After a Loss
keikilove
member
Intro, MTHFR, Clotting Disorders
keikilove
member
Hi ladies, can anyone share what the difference is between this group and the thread for TTCAL that is included in TTGP? I may have shared too much when intro-ing over there, hopefully this is the right place.
First off, I'm really sorry that we are all in this club. I would think we don't have to *TW* since this is specifically related to loss, but I will *TW* that my intro does reference a prior pregnancy and living children. (Edited from my former BMB)
I recently suffered a late loss during a pregnancy in which I felt continuously sick, suffering from pretty low blood pressure, dizziness, nausea, killer non-stop headaches, and extreme fatigue. I felt that I was sleeping too much (12-18 hours a day when I got really sick in the final month). My OB dismissed all my symptoms as "normal second trimester issues". The night before my anatomy scan the baby kicked 3 times and I could finally see it from the outside. I thought, "Oh good! Now my husband will be able to bond with her since he will be able to feel and see her movements. I've been bonding with her since she began moving..." The next day I saw my MFM specialist for my routine appointment, but he said there was no heartbeat. We were shocked. He said this was very very unusual so far along in pregnancy, but sometimes happens and there is usually no answer for why. He said it looked to be very recent because the baby appeared to be perfect. I had to be induced and delivered our daughter at 18 weeks. She was absolutely perfect with beautiful little fingers and toes. We got handprints and footprints and said goodbye.
REASON: The autopsy showed nothing abnormal, nor did the blood tests. I needed answers so badly that I stayed up all night reviewing my whole health history; in some very old blood test paperwork from a chronic illness years ago I think I found the answer: "Patient has gene mutations of MTHFR and PAI-1, both of which can lead to blood clots and may affect pregnancy." While doctors will say these issues are very very rare, there are thousands of women with the same gene mutations who are experiencing repeat early miscarriages, late losses, and stillbirth (I've joined some support/info groups on FB). The simple solutions (that aren't foolproof) appear to be baby aspirin, fish oil, folate instead of folic acid, and Lovenox injections to diminish the risk of blood clots. There also seems to be a strange pattern for many of us: women either experience many early miscarriages or, like me, women are able to have one or two healthy babies and then begin experiencing late losses/stillbirths thereafter. The trend I've found in my online groups is that many doctors aren't very knowledgeable of these mutations; you must push and advocate for what you need if the next pregnancy is going to be successful. Fingers crossed that all will go well in the future...
QUESTIONS: I have pored over this Bump website and a couple of others online to learn from others who have the mutations. There aren't many resources on TheBump, but there is a very informative group called the "Lovely Lovenox Ladies" on BabyCenter (that site is actually good for something!). Can any of you relate to this? Do you have any more helpful info to add to my post? Please, if you can, share here so others who come across this might find some answers for themselves. Many thanks.
First off, I'm really sorry that we are all in this club. I would think we don't have to *TW* since this is specifically related to loss, but I will *TW* that my intro does reference a prior pregnancy and living children. (Edited from my former BMB)
I recently suffered a late loss during a pregnancy in which I felt continuously sick, suffering from pretty low blood pressure, dizziness, nausea, killer non-stop headaches, and extreme fatigue. I felt that I was sleeping too much (12-18 hours a day when I got really sick in the final month). My OB dismissed all my symptoms as "normal second trimester issues". The night before my anatomy scan the baby kicked 3 times and I could finally see it from the outside. I thought, "Oh good! Now my husband will be able to bond with her since he will be able to feel and see her movements. I've been bonding with her since she began moving..." The next day I saw my MFM specialist for my routine appointment, but he said there was no heartbeat. We were shocked. He said this was very very unusual so far along in pregnancy, but sometimes happens and there is usually no answer for why. He said it looked to be very recent because the baby appeared to be perfect. I had to be induced and delivered our daughter at 18 weeks. She was absolutely perfect with beautiful little fingers and toes. We got handprints and footprints and said goodbye.
REASON: The autopsy showed nothing abnormal, nor did the blood tests. I needed answers so badly that I stayed up all night reviewing my whole health history; in some very old blood test paperwork from a chronic illness years ago I think I found the answer: "Patient has gene mutations of MTHFR and PAI-1, both of which can lead to blood clots and may affect pregnancy." While doctors will say these issues are very very rare, there are thousands of women with the same gene mutations who are experiencing repeat early miscarriages, late losses, and stillbirth (I've joined some support/info groups on FB). The simple solutions (that aren't foolproof) appear to be baby aspirin, fish oil, folate instead of folic acid, and Lovenox injections to diminish the risk of blood clots. There also seems to be a strange pattern for many of us: women either experience many early miscarriages or, like me, women are able to have one or two healthy babies and then begin experiencing late losses/stillbirths thereafter. The trend I've found in my online groups is that many doctors aren't very knowledgeable of these mutations; you must push and advocate for what you need if the next pregnancy is going to be successful. Fingers crossed that all will go well in the future...
QUESTIONS: I have pored over this Bump website and a couple of others online to learn from others who have the mutations. There aren't many resources on TheBump, but there is a very informative group called the "Lovely Lovenox Ladies" on BabyCenter (that site is actually good for something!). Can any of you relate to this? Do you have any more helpful info to add to my post? Please, if you can, share here so others who come across this might find some answers for themselves. Many thanks.
Re: Intro, MTHFR, Clotting Disorders
This board is a bit more relaxed since there are less of us (we're not just one small segment of the huge TTGP quadrant), but we still have a few rules. We don't usually TW any mentions of loss, since the entire board is for loss. We do tend to TW mentions of live children. However, it's more of an unspoken rule of kindness than anything else.
Unfortunately as for your specific questions, I don't have MTHFR or clotting issues, so I can't personally speak to any of those.
But I am sorry for your loss, and welcome to our little group!
MC #1: D&C Oct 23, 2015 (7.5 weeks)
MC #2: July 1, 2016 (5.5 weeks)
MC #3: October 17, 2016 (CP)
RE #1: RPL testing November 2016-January 2017
MC #4: Feb. 28, 2017 (CP)
RE #2: Additional RPL testing March-November 2017
MC #5: January 2019 (6.5 weeks)
RE #3: More testing 2023.
Egg Retrieval Sept/Oct 2023, 2 good embryos after PGT-A testing.
Surgery for endometriosis January 2024
Lupron Depo March 2024. Benched 3 months. Hopefully FET after that.
#BitterHagPartyOf1
Regarding the lack of information, I agree, but I think that's at least partially due to the lack of consensus in the medical field. In my case, I tested negative for clotting disorders and at least with the research I've done, it doesn't seem like my form of MTHFR means much. Certainly the usual precautions didn't do anything for me, but then again, it could have been a bad egg and the treatment may otherwise have worked. Who knows? Without definitive answers, all we can really do is speculate and that's probably why you're not seeing much.
Anyway, that was kind of rambly, so sorry for that. Welcome to the board - the women here are amazing and you'll get a lot of support.
I’ve never been tested for MTHFR so I dont have advice to offer. However, I do wonder if I should be tested as the u/s from my MC described two subchorionic hematomas...when I asked my doc about that part of the report he said it wasn’t relavant to the loss and refused to test me for APS. I wonder if he doesnt want to test me for other issues simply because I have a diagnosis of PCOS and he figures it all comes back to that. It’s also probably because I’ve only had one loss. But one pregnancy one loss in three years of trying sounds like pretty terrible odds to me. I just have so much trouble getting pregnant I feel like if I finally do manage to get KU I don’t know if I’d survive another loss....
anyway that was a long rant I’m sorry I guess that’s been sitting on my chest for a while...sorry ladies.
@dpjennifer Thanks for the explanation about this group, that now makes total sense. I didn't see this separate group before so went to the TTCAL thread within TTGP first. I can now see the purpose each has, I like having both options.
@ruby696 Thank you for your reply. I also have a mild form of MTHFR, mine is the heterozygous A1298C, also often called "the best form of the mutation" to have. My homocysteine levels were in the low-normal range so I don't know for sure if mine is responsible either--I think it's the combo that caused the loss. I suspect we will learn later that each person is affected differently based on what other unique genes/issues they have...
@Mack2342 & @char245 Thank you for your warm words. I am sorry you find yourselves here as well.
@obsessedwithoranges I'm sorry for your loss. Thank you so much for the resource, I will look into it! I was so ill that I definitely felt like my body was attacking the pregnancy but had no way to prove it so I will surely look into this group you shared.
@justarius I totally relate to what you are saying and can understand your frustrations. Why do some doctors make things difficult...? Rant anytime, we don't mind.
MC #1: D&C Oct 23, 2015 (7.5 weeks)
MC #2: July 1, 2016 (5.5 weeks)
MC #3: October 17, 2016 (CP)
RE #1: RPL testing November 2016-January 2017
MC #4: Feb. 28, 2017 (CP)
RE #2: Additional RPL testing March-November 2017
MC #5: January 2019 (6.5 weeks)
RE #3: More testing 2023.
Egg Retrieval Sept/Oct 2023, 2 good embryos after PGT-A testing.
Surgery for endometriosis January 2024
Lupron Depo March 2024. Benched 3 months. Hopefully FET after that.
#BitterHagPartyOf1
CP 3/2019
Edit because I missed the comma and it bugged me haha
I went for my checkup on 10/10/18 I would've been 10w 4days baby only measured 8 weeks they told me I wouldn't have to change anything except to take 2 baby aspirins a day and blood pressure medicine because mine was high but they were unsure if it was high due to pregnancy or the fact that I was miscarrying im currently ttc for my rainbow.. I do not have any living children and that was my first pregnancy
@SpongeWorthy I had assumed that the pathologist had done a thorough job during the autopsy but I was wrong. My hematologist used to work in pathology so after he reviewed my documents he called pathology and asked them to inspect the placenta slice by slice to look for clots. We are waiting on those results now for a definitive answer. My hematologist also schooled himself on the PAI-1 mutation that he was unfamiliar with and says that now he knows I need to be on Lovenox for the two clotting disorders in future pregnancies. Thank God!
@knottie8ccbce5a8299d7e2 I am so sorry for your loss. I think you and I are both very lucky to know what may have caused our losses--not knowing would make me crazy and could also lead to repeat losses. I spoke with another expert doctor I used to see for a chronic illness and as soon as he heard about the MTHFR and PAI-1 he said, "Oh yes, you have to be put on Lovenox right way when you become pregnant again. You must." So, if I were you I would push that with your doctor. My understanding is that PAI-1 4g/4g is the most dangerous one of the three types of the mutation. Sorry.