Intro, MTHFR, Clotting Disorders

keikilove

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.

dpjennifer

keikilove I've found that many of the people in TTCAL on TTGP started out in TTGP and after a loss went to that thread on the board there.  The ladies here tend to be ones who had a loss and either came straight here when they were ready to try again, or went to the MC/Loss board first and then were directed here when they were ready to try again. However, there is a lot of overlap as some people (like myself) do both, and others only do one or the other.

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!

ruby696

@keikilove First, I am so incredibly sorry that you're here. I have the mild MTHFR mutation - heterozygous C677T. I was on low dose aspirin, B12, methylfolate and DHA last pregnancy, but it never developed beyond 5-6 weeks. I was not taking anything special beyond dha and a methylfolate prenatal for my prior losses. I see an RE tomorrow and we'll see what she says, but I'm not sold on MTHFR being my problem. 

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. 

Mack2342

I have no experience with that but wanted to say I’m sorry for your loss. 

obsessedwithoranges

@keikilove hi, I can completely relate. I had a late loss too (was in 2nd tri). I don’t have the gene mutation but I have an autoimmune disease which caused placental insufficiency. My body attacked the placenta as a foreign invader. For any next preg I need to be on Lovenox, aspirin and plaquenil (immunosuppressant drug). It’s pretty scary bc you’re right - not a lot of resources and I’ve found that regular OBs are completely clueless! I’ve found some answers/ support in a Facebook group -maybe you can start there? Mine is Chronic Histiocytic Intervillositis, which isn’t exactly what I had but close enough to where I can relate and learn from others going through it. Most women in the group have had late loss/stillbirth.  You may want to see if you can find a more specific fb group for MTHFR mutation, but the CHI group is really helpful if you can’t! Hang in there. What I’ve learned over the last year is that you really have to be your own advocate. 

char245

I don’t have any experience with MTHFR but just wanted to say welcome and I’m so sorry for your loss! 

justarius

First of all I want to say welcome and I’m So sorry for your late loss - I can’t imagine how incredibly hard that must have been.

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. 

ruby696

@justarius Happy to listen to you rant.  Maybe you should get a second opinion? A different doctor may offer you more treatmentm

keikilove

Thank you all for the kind words and the helpful info.

@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.

ruby696

@keikilove I'm 37, so my last MC definitely could have been egg quality. I saw heartbeats with two other MC's - I wish I had been taking low dose aspirin then. *TW* I do have two living children (4 and 2.5), which is even more confusing. *End TW* I had genetic testing done and my OB didn't even notice the MTHFR finding. I found it after picking up my own copy of the report. I'm interested to see what my RE does with the info. I'm also curious about what the criteria is for low dose aspirin vs lovenox/heparin injections. So many questions....

40momma

I've been diagnosed with elevated cardiolipins but my genetic testing came back normal. I'm on baby aspirin and heparin if/when I get pregnant again. My naturopath also has me on vitamin B, fish oil, extra folic, vitamin D and my pre natal. I'm sorry I don't have any answers, I wish I knew for certain that we've found my answers but we don't know. I've had 3 mc, no living children 

dpjennifer

keikilove  No problem! I like being in both groups too, even though there is some overlap. Mainly because at this point I've been around for a while and at some points this board doesn't get much use, and the TTCAL thread in TTGP is super busy... and at other times it's reversed. So it's good to get support either way.

SpongeWorthy

@keikilove Welcome, and I am so sorry for your recent loss.  Did your doctor send the placenta to pathology to see if it was clotted?  If it is, that's a definite red flag for your blood clotting disorder causing problems.

I mentioned a little bit of my story on your TTGP intro, but I'll explain more here.  As far as I know, I do not have a MTHFR mutation or a blood clotting disorder.  But during my previous pregnancy, my son developed severe intrauterine growth restriction.  When he was born at 34 weeks, he was only 2.5 lbs.  What they believe happened is that he had a genetic disorder that created a very small placenta and umbilical cord (which is why he was so small), and also caused him to have numerous birth defects (brain, eyes, mouth, jaw, heart, etc).  When I met with my MFM to discuss another pregnancy, she said the placental issues were most likely not caused by me, but she put me on low dose aspirin just in case.

justarius

@ruby696 I would have honestly gotten a second opinion a long time ago but I live in a small city in Canada where we only have one fertility specialist, a whole bunch of OBs who would all just want me to see him (which is the doc in question) and no REs haha so I’m kind of just stuck with him. 

Edit because I missed the comma and it bugged me haha

knottie8ccbce5a8299d7e2

I also have mthfr and I have pai-1 4g/4g 
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 

keikilove

Thank you, ladies for the kind responses.  I'm not sure why I didn't see any of them until today, sorry for the late reply.  

@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.

knottie8ccbce5a8299d7e2

That's what it's looking like he said it would either be 2 aspirin or lovenox I think I'm going to just go ahead with the shot if I want a baby I'm gonna have to just face my fears also progesterone suppositories and folate instead of folic