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Parents of lost babies and potential of all kinds: come here to share the technicolour, the vividness, the despair, the heart-broken-open, the compassion we learn for others, having been through this mess — and see it reflected back at you, acknowledged and understood.

Thanks to photographer Xin Li and to artist Stephanie Sicore for their respective illustrations and photos.

ttc | pregnancy | birth after loss > No One Wants to Test Me for MTHFR

Hi,

I got more blood test results back today. I insisted that my OB test me for every clotting disorder that he hadn't gotten to yet, and they coincided with the clotting disorders my MFM also wanted to test me for: Factor V Leiden, Antiphospholipid, etc. My OB called me today to tell me everything was normal. I've been through two rounds of blood tests so far: I had one set done in the hospital at the time of my son's stillbirth, and another set at my OB's office 8 weeks after. I am running out of disorders to test for that could explain the cause of my son's stillbirth, and as to why I had a huge blood clot in my placenta, presumably leading to his death. (Whether it was just the clot leading to oxygen deprivation, or a placental abruption, my OB isn't totally sure, but he believes it was more of an abruption, albeit not a major one).

So. I asked both the MFM and my OB about MTHFR. The MFM dismissed it--she briefly discussed differences between heterozygous and homozygous, but said it was relatively "outdated" as a cause in and of itself for pregnancy losses. I brought it up to my OB today, after he told me my blood test results were all normal, and he also stated something to the effect of "if your losses were consecutive miscarriages, we would have thought it necessary to test you for it," and also explained that it often isn't the "sole cause" of a stillbirth or clotting.

Yet I see many loss moms post about testing positive for it. This confuses me.

Am I to just assume that because I don't test positive on "any other" clotting disorders that I don't have a clotting disorder at all, and I should just disregard MTHFR? Why do they both seem so fine with dismissing it as a non-cause? I have a lot of faith in my MFM especially, she appears very intelligent and capable, and is closely monitoring the subsequent pregnancies of two patients who have suffered full-term stillbirths like mine.

But why is she just dismissing MTHFR? Why is my OB also doing that? He seemed pretty open to testing me for everything else I've demanded, but not this? I am thinking of calling him back and demanding he test me for this as well.

Have any loss moms also had trouble getting testing for *absolutely everything*? Or did you also get the disappointing outcome of there being "no cause," and then no abnormal blood test results? Why does it seem like my son's death is a "total fluke" after all? This really annoys me. Even my OB admitted that I must be frustrated because I still don't have a solid "answer" to all of this. But really, wtf???

Am I really just going to have to accept the fact that my son died for *nothing?* No possible reason? Just a blood clot? A random occurrence of nature? A freak accident?

I don't know, sometimes I feel like I'm just still grasping at straws here. With no actual cause, my mind starts to linger toward the "stupid" things, such as blaming the flu shot again (he died one or two days after I got the vaccine, so my mind likes to link together the two events based on timing). I think the very last thing I have thought to test for is MTHFR. But if I am positive for either heterozygous or homozygous, how do I know how to adequately treat it for a subsequent pregnancy?

Have there been loss moms who have just gotten baby aspirin + lovenox for NO proven clotting disorder? I know both my OB and MFM are on board with me taking baby aspirin as a precaution, but maybe I can convince them to also put me on an additional blood thinner to ease my nerves. I know it might sound paranoid to them, but I am willing to do anything it takes--and I mean *anything*--to have a healthy baby this time. I don't care if I have a clotting disorder or not. I would admit myself into the hospital for 9 months straight if I could. I would take all the heparin, lovenox, and baby aspirin in the world if I could, as long as I know it will safeguard my child and improve my chances for his or her survival.

I just want to be safe. I am so confused, and so frustrated.
January 19, 2017 | Unregistered CommenterNada
I think you can test it yourself through www.23andme.com but you'd have to check. You can sync your genetic data with www.livewello.com. Have your doctor's tested your homocysteine levels? I know my parents tested themselves after our ordeal so that they could see which one of them had the mutation. I'll see who they went through. Regardless though, there really isn't much by way of treatment or prevention. I took 5mg of folic acid, vitamin B6, calcium/vitamin d, baby aspirin and injected myself with low molecular weight heparin while I was pregnant. Everything aside from the heparin, you can get on your own. Some doctors believe MTHFR causes problems and some completely dismiss it. I think a lot more research needs to be completed before more doctor's take it seriously.
January 20, 2017 | Unregistered CommenterEjb
Hi Ejb, thank you always for your support and advice. I think I am going to call my OB up AGAIN and beg him to test me for it. If it's the only thing left I can check out, why leave it unchecked????? I also checked 23 and me and I don't see MTHFR but I will double check again soon. I am also thinking of taking baby aspirin as soon as I am set on TTC and not stopping it until I absolutely have to (hopefully right before a successful delivery). Basically, self-medicating...
January 20, 2017 | Unregistered CommenterNada
Hello nada, have you already been told that you would be put on aspirin and lovenox in a subsequent pregnancy? I too have clotting issues with no definite diagnosis. I had a DVT after my first loss. Something is off, it might be APS, but maybe not as the antibody levels pointing to this are only slightly raised, as are a few others that don't suggest APS but maybe something else. In the end, my doctor gave up on testing. He explained to me that it does not really matter which name my clotting problem has. As far as he is concerned, I have one, and the treatment for any clotting problem during pregnancy would be the same: aspirin and lovenox. He also recommended compression tights. He is not a MFM but a hematologist at a university clinic who I was sent to by my MFM who said he knows best. I did trust his judgement, as much as I wanted answers. In my next pregnancy I followed his advice. I had bloodwork done every 4 weeks to check on the coagulation. It all went well and baby was born alive and kicking.
So what I am saying I guess - getting preventive treatment is most important I think! Still hope you will get some answers.
January 20, 2017 | Unregistered Commentercee
Hi Cee, thank you so much for sharing your experience with me. I am sorry for your loss and congratulations on your rainbow.

I was told that I would definitely be put on baby aspirin, whether or not I tested positive for a clotting disorder. However, I didn't get any confirmation in terms of lovenox. I feel like my MFM and OB will tell me it's overkill, as I lost my son at 38.5 weeks. But the placenta had a pretty big clot. So I am thinking I will suggest they put me on lovenox anyways, in addition to the baby aspirin. I don't know if they would agree with me or not. I've never had any issues with blood clotting before, or a DVT, or anything prior. So this all seems to just be guesswork as to precautions we can take, but nothing is really guaranteed...

Hearing about your rainbow baby gives me hope. Maybe I should speak to a hematologist as well? --I don't know if I'm just overreaching at this point.
January 20, 2017 | Unregistered CommenterNada
Hi Nada,

I was referred to a hematologist after my last loss (a late miscarriage as a result of a subchorionic hematoma that bled out), and because of my history (full term stillbirth, early miscarriage, trisomy 18 termination & late miscarriage), was tested for everything. My first set of results came back as a low positive for APS, so I was tested again and the low positive result returned. My hematologist thinks the APS results are "possibly" why my son was stillborn at 39 weeks in 2014, but at the time, the cause of death was unknown.

I remember before my blood results came back, my OB said that they would probably prescribe baby aspirin and heparin for subsequent pregnancies because they are "harmless interventions" and would provide reassurance. Of course all doctors are different, but if you're really anxious about losing another baby, you should make sure you doctor understands your worries. As Cee said, preventative treatment is important - especially if it's not going to impact the pregnancy. I'm very much on the low end of the APS spectrum but even having access to a hematologist has been reassuring.

After four losses, I'm pregnant again and take daily heparin injections, baby aspirin, 5mg of folic acid, Vit D and an iron supplement. It's been stressful but I'm managed to make it to 23 weeks. If you think seeing a hematologist would be reassuring, then do it. If there's one thing I've learned these past few years, it's not to feel bad about asking for anything. You lost your son..do whatever you have to do to feel reassured.

Shannon.
January 26, 2017 | Unregistered CommenterShannon
Hi Nada, I tested compound heterozygous for MTHFR and saw an MFM who treats it. He consulted with my OB who wasn't really convinced, but she prescribed it and I had my rainbow 16 months ago. My first daughter was a full-term stillbirth at 40 weeks 3 days with no explanation. I convinced my RE to test me for it and he did but he was kind of dismissive about it. I'm pregnant with my third and on the same protocol of lovenox injections daily.

My MFM is known in my loss circle for treating MTHFR, pretty much the only one around who takes it seriously. My OB had my protein s levels tested as well and they were abnormal so she got on board with the lovenox when my MFM contacted her. I was also induced at 37 weeks. I was a little scared about it at first, but it was a relatively low risk chance to take to bring a baby home.
February 3, 2017 | Unregistered CommenterMichele
Shannon and Michele, thank you for your help.

Shannon, I'm sorry for your losses. And congratulations on your current pregnancy. I have my fingers crossed for you. My MFM mentioned baby aspirin as a preventative measure regardless of my results, but I would like to advocate for heparin or lovenox as well. If it's not harmful, as you said, maybe it won't hurt. I'm scared to go into another pregnancy "blind" because I've been negative for everything so far, but I can't shake the feeling that they could be missing something that could have been overlooked and easily lead to another loss.

Michele, your story makes me definitely want to get tested for MTHFR. It seems that everything else can be negative but MTHFR can be positive and lead to some clotting. I want to know I have everything covered for a subsequent pregnancy and I really don't think it should be this difficult to get tested. I am surprised there's such a lack of OBs who view MTHFR as a credible cause of loss. It's so frustrating! I am glad the lovenox shots helped you have your rainbow and I am also sorry for your loss. Your story gives me a lot of hope.

So, I am going to request my blood test results, analyze them carefully, and go ahead and request anything else they missed (such as MTHFR). Then I will demand something additional to the baby aspirin to put me at ease. Hopefully I will make some headway.
February 4, 2017 | Unregistered CommenterNada
Hi guys, it looks like I'm compound heterozygous--I have one copy of the 677 and one copy of the 1298 mutation. Is anyone else compound heterozygous? How were you treated?
February 10, 2017 | Unregistered CommenterNada
Sorry Michele I just read your post again and realized you are compound as well. So maybe I will request lovenox. I did testing on my own through a website that sends you swabs for MTHFR DNA tests.
February 10, 2017 | Unregistered CommenterNada
Hi Nada, I am homozygous for c677t, and read a lot about MTHFR because before getting pregnant with Brandon I had 2 early miscarriages. I could not find a doctor who would put me on lovenox, but i was told to take extra vitamins b6 and b12, methylfolate and not standard folic acid, and I also took wobenzym n and nac supplements. Not sure if you checked out MTHFR.net but there is a lot of information out there. Best of luck to you.
February 11, 2017 | Unregistered CommenterCristiane
Hi Nada,
First of all, I want to say that I am so sorry for your loss. And for your frustration, and for your not getting answers, and for not feeling like your doctors are willing to move mountains to get them for you. I think I can say I have experienced all of those things also. If those doctors aren't taking your concerns seriously, consider another doctor. They should be at least willing to talk through their logic/studies/ect. because they should have your best interest in mind.

My previous pregnancy was just ridiculously complicated. I had a history of two unexplained miscarriages. Then, when I became pregnant I fell down the stairs and broke a bone. So who knows what caused my bleeding and clotting issues. I ended up with a blood clot, and since that happened I got a heparin drip and was on lovenox for most of the remainder of the pregnancy. Doctors are unclear if was related or not, but I had a subchorionic hemorhage that my body tried to hold onto for so long. That is simply what they call a placental abruption before a certain week marker in pregnancy. I was diagnosed with the hemorhage at 9 weeks, and was kept on the lovenox. I would have random bleeds that would resolve. The doctors do not like the combination of bleeding and blood thinners. Basically with these hemorrhages, your body is goofed up and bleeds in the wrong places and tries to componsate with clotting-usually in the wrong places. Blood thinners cause more bleeding. This is a scary and difficult thing to balance-and it's tricky-even for doctors. I was taken off of all blood thinners at the 25 weeks when I had a huge bleed, and continued bleeding for the next two weeks in the hospital. All of the bleeding eventually irritated everything enough that it actually caused a preterm rupture of membranes. My water broke. This put me in more dangerous territory, and despite the odds, I was able to not deliver or develop an infection for 2 weeks while in the hospital. Then my body went into labor. At over 27 weeks, I was in labor (which they didn't stop because of infection risks, ect.) and during the time I was getting an epidural, I had a total placental abruption. I'm lucky I was already hospitalized, so they were able to deliver the baby and save me. My son SHOULD have been ok (like 97-98%) chance of being ok. However, for whatever reason his lungs just weren't able to work. He died about 30 minuets after the emergency run down the hall c-section. It was pretty devastating.

They did do an autopsy and could find no cause- except to say that his lungs just weren't mature enough-but most babies with similar lungs are able to work with help. And he got help! I was tested for just about every blood clotting issue because the blood thinners/and clotting issues with my placenta and my past miscarriages could explain why those things happened. But, nothing. I looked good on the bloodwork. They did test me for the MTHFR and said it would be shocking if I had it, since I had previously had 2 successful live births at viable times. The fancy genetic doctor was emphatic that MTHFR only usually happens if people have had multiple miscarriages and can never get past the first trimester window. I was glad bloodwork came back clean but perhaps angrier I STILL didn't have any answer or cause. I think I honestly would be happier if I could know there was something wrong with me and have a peace about knowing about what it was. Instead I have been given the harder work of coping with that what happened to us just did- we hit all these ridiculously low odd statistics for bad things happening to us. I have a friend who has had 2 of her 3 sons born with the same rare heart defect that required heart transplants. And they are theoretically not genetic, they were just super unlucky, statistically. They still have no answers, just a hard path. Life can be intolerably unfair and confusing.

I am now barely 6 weeks pregnant. This time around- my doctor wants to do a low dose aspirin. So far, so good, but it is a LONG road ahead. The truth is the doctors are trying to do their best- but do not know everything. I used to have so much blind trust. I have to think of them more as smart educated people now. I feel confident with my doctors and the facility we are at. But they don't have all of the answers. And its not fair. They are doing the best to treat issues that they aren't sure or not we have. I have studied a lot about taking the low does aspirin. I'm a nurse so I do have access to a lot of up to date medical studies. It turns out aspirin is really beneficial for a number of things like early pregnancy loss, reducing preeclampsia, and with different clotting issues. It's encouraging.

Blood clotting and the factors are pretty complicated. I will say this- being on Lovenox for the entire pregnancy before did not help me or make my baby magically healthy. In fact, with my clot/bleed/abruption my doctors thought it unsafe to continue on them for the last two weeks. It's always a risk benefit thing. You do your best, you listen to your doctors, voice your concerns. Ask questions. just know that taking mega doses of all the possible blood thinners isn't going to be the answer. I wish it could work like that though. My doctor a few days ago mentioned to me that he does not like mixing aspirin with lovenox, that in his opinion it is one or the other. I have friends who have also done one or both but the doctor is super opinionated about a window he wants it taken. (ASA in early pregnancy, lovenox later). I don't know. Many opinions. Try out different doctors and ask for reasoning when they say that they think X is good to do/take/ect. I have been really encouraged because by doing that- the doctors that seem smart and actually care are happy to give their reasoning based on this study, this new standard, and so on. The doctors that shrug after being asked a question or say "that's just the policy here", are the doctors that you need to fire and move on from. The good doctors truly have your best interest at heart and don't get upset when you ask for them to explain. We pay them the big bucks to be advocating for us and to have the best up to date information and statistics. It's literally their job. And if they are bad at it, then we as consumers need to move on.

Ask lots of questions. Know that there is no magical formula or perfect treatment plan- but there are often standards. The plans are different for each individual because we all are different- with different medical histories. We kind of have to have faith/take a huge leap if we are up to trying again or find ourselves pregnant. The worst part is not having answers. It's scary. I know exactly how you feel.

I'm hoping you find a great doctor or team of doctors and feel that they are working hard to get you answers and if they can't do that, that they are at least providing the best possible information to you that they can find. This time around- I am seeing the same doctor each visit instead of seeing random doctors in the practice. It makes me feel better. Sorry this was so long! Hoping this can calm your nerves a bit.
February 16, 2017 | Unregistered Commenterapril
Nada- I honestly thought I may have written your story and forgot! It is the exact same, up to the stillbirth due to placental abruption after a flu shot and researching into the MTHFR mutations and not having my MFM Doctor test me. I went hardcore into research and also convinced myself I needed this MTHFR blood work done. She emailed me the literature which they practice off of which finally set my mind somewhat at ease.

The problem with everything you find on the internet is a lot of it is outdated, medical research changes to frequently, combined with people you don't even know on random websites, telling you what they also found out just by dr. google. Some of these major pushers of MTHFR are not even doctors yet, Naturopaths. If you have recurrent miscarriages, there is a greater link than a placental abruption- an important piece to remember.

I'm currently pregnant again after my loss only 3 months ago... I'm on daily baby aspirin but scared out of my wits. I've been testing for everything under the sun in relation to PA except for MTHFR. I even went to another doctor, not my OB or MFM, and she was willing to test me. In the end, after our discussions, I decided not to do it. I have several reasons why if you'd like to chat please send me an email... michelleann289@gmail.com
February 24, 2017 | Unregistered CommenterNada
Oh and also, I have no clotting disorders and no high blood pressure etc. I even did a full vitamin panel to ensure I was not depleated in anything before TTC'ing again. I also wish I could just live in the hospital right now until my due date. its so terrifying. I also kindly asked my doctor's to STOP using the term "fluke", I just can't wrap my head around that. My MFM did not want to put me on a blood thinner because she said there was no need and would be more risky. Of course I read several stories online of women who had aspirin and lovenox and had their babies so that is why I was pushing for this for myself. I think she wanted to ring my neck with all my internet research that I brought to her! But, we do need to be our own voices and do everything we can or our minds will suffer. If I lose this second baby, I can't say now that I didn't open every door and do everything I thought I could to prevent this again. <3
February 24, 2017 | Unregistered CommenterNada
Hello Michelle Ann,

That's crazy that your story is so similar to mine. It's the most frustrating thing in the world to be healthy with no explanation as to why our stillbirths happened and no guarantee it won't happen again. I HATE the fluke term the term doctors love to throw around. Congratulations on your pregnancy, I know I will also be very nervous once I'm in your shoes. I'm glad your MFM is so cooperative in the sense that she showed you medical journals so you understand where the research was coming from. That's so good. Hopefully that eases your nerves a bit. I hate that this happened to you too but it feels better that I can talk to people who went through similar situations to me. Feeling less alone is so important through all of this.
February 25, 2017 | Unregistered CommenterNada