This is an update to what I have found out about my new diagnosis – a double copy of the MTHFR mutation (homozygous C677T MTHFR mutation).
MTHFR Basics
This link is a great post on the basics of the mutation, what it means for me in general, and how it can impact a pregnancy. This mutation isn’t uncommon, however, because (at least according to what I’ve read) 12% of the population has it as well. I’d like to find the actual research articles the following information was gathered from, but I haven’t found them yet.
“Research shows that those with the mutation show a higher propensity for thrombosis (blood clots), arteriosclerosis (hardening of arteries), Alzheimer’s, stroke, heart attack, Fibromyalgia, migraines (especially with “Aura” migraines), osteoporotic fractures, bone marrow disorders and for those of child bearing years, it has found to be connected to higher incidences of down’s syndrome, spina bifida, other neural tube defects, trisomy, miscarriage, stillbirth, implantation failure, placental abruption, preeclampsia, higher incidences of autism, amongst others. Additionally, if you test positive you may want to have your parents, siblings, and any children you may already have tested, as well. There are a few positives to this disorder. Because folate is necessary for cellular division, there is support that shows having this disorder can actually help keep certain types of cancer cells from multiplying as rapidly, so there are some benefits from having this mutation.”
MTHFR High Risk Pregnancy
As far as getting risked out of an out of hospital birth, according to Florida Midwifery law, a blood disorder such as mine would give me a “3” on the risk assessment.
“If the risk factor score reaches 3 points the midwife shall consult with a physician who has obstetrical hospital privileges and if there is a joint determination that the patient can be expected to have a normal pregnancy, labor and delivery the midwife may provide services to the patient.” (http://mana.org/laws/laws_fl.htm)
What I want to do is have a consult with our local perinatologist and get his opinion. He would likely be the doctor I would do this consult with anyways, and I would be very curious as to what he would say.
MTHFR Pregnancy Treatment Protocol
One of the most frustrating pieces to my research is treatment plans. It seems like there isn’t a lot of research out there that gives a definitive treatment plan during pregnancy with this disorder. Some women take aspirin and extra folic acid, some women do that AND heparin injections, and some women take a special prenatal that has L-methylfolate in it as an alternative to folic acid.
Honestly, I’m a little turned off by the prescription drug company PUSH I have found on the internet forums. In general, I’m turned off by the prescription drug companies anyways. I just think that the answer isn’t always synthetic drugs, you know?
MTHFR Diet
Of all my research I have seen no discussions on increasing foods rich in folate such as…
- spinach
- green leafy vegetables
- free range organic chicken eggs
- grassfed beef/chicken livers
- lentils
- black beans
- raw milk, etc.
It makes sense to me that eating foods that have organic nutrients in them would be ideal. Also, I would assume that foods that are fortified with folic acid would be worthless (for me) because they’re synthetic – what’s the point??
MTHFR and Pregnancy
I thought it would be helpful for me to write out all that I’ve learned from my perinatologist. So, keep reading if you’re interested!
The bolded text are the questions I asked the doc and the text in italics is the answers that I remember.
What are the potential risks for myself during pregnancy, labor and delivery, and postpartum with MTHFR?
I am more prone to blood clots in general but during pregnancy even more so because our blood clots more than usual (nature’s design so that we don’t bleed to death after we give birth). My risk of blood clots is greatest for the first six weeks postpartum.
What are the potential risks for my baby during pregnancy, labor and delivery, and postpartum?
My baby has a higher risk of miscarriage due to blood clots and placental issues. There is a greater risk of still birth and intrauterine growth restriction (IUGR) for the same reasons.
How long should I wait before trying to get pregnant?
I need to give my body three months of a daily intake of baby aspirin and extra folate. It’s not an emergency if I don’t, but highly recommended that I do.
What treatment plan would you recommend for MTHFR and pregnancy?
1 baby aspirin, 1 mg of folate plus a prenatal vitamin that has an additional 1 mg of folate in it.
Would heparin injections for MTHFR and pregnancy be helpful?
Heparin isn’t necessary during pregnancy because my doctor and the one I saw today both feel that the folate and baby aspirin will remedy my issue. Heparin injections might be helpful postpartum, but the doctor didn’t seem definitive about that.
Would I need extra monitoring during pregnancy/birth?
Starting at the 7th month extra monitoring is required to make sure there are no growth restriction issues and that the baby looks healthy. Assuming baby is healthy no extra monitoring during the birth is required.
Can I test the levels of homocysteine in my body?
My doctor ordered labs to check the levels of homocysteine in my blood. A lower level is better and it will show how MTHFR is effecting my blood. This is where it kinda gets over my head….
I gave birth to my son in an out of hospital setting, would MTHFR risk me out of a non-hospital birth?
Well ladies, he didn’t say I COULDN’T have a homebirth, he just told me all about how he doesn’t like homebirths in general (he cited some study that was done in Mississippi which showed that the mortality rate was drastically lowered when women started to have their babies in the hospital. Something tells me that study was taken out of context. Does anybody know what study he’s talking about?)
But when asking pinpoint questions about my risk, and if me/baby looks good he didn’t think that I would be any higher risk than normal especially if I’m taking all my pills. Honestly, he was more concerned about postpartum than where and with whom I give birth. He said it was my decision and up to “the midwives”.
I tried to explain to him that it’s not necessarily up to the midwives because of the Florida Risk Assessment, but I think at one point he put his hands up which basically told me he wants nothing to do with “signing off” on my homebirth. However, I am VERY happy with the information he gave me and I am more at ease about my condition. I would feel very comfortable having a homebirth (if it were solely up to me) if I were crazy diligent about taking my pills and with extra 3rd trimester monitoring which showed everybody looked healthy.
Phew. That was a lot. What do you ladies think?
Lauren harmon
Wednesday 25th of July 2018
I found out today that I have C677T mutation, but only a single copy of it. My youngest has A1298C and C677T mutation (and a tongue tie and other midline deficits). We haven't found out about the two big kids. Other labs (Vit. D for one) were in the tanks as far as where they should be. Do you have a specific prenatal that you recommend? OB didn't pull the labs, my PCP did and is sending them over to my OB. I already know I'm having another cesarean, when you've had 3 emergency ones due to pre-e you don't even ask about a VBA3C right? But the link to pre-e and MTHFR is pretty eye opening. I had called MFM when I found out about #4 to see if they had ever run MTHFR with the other 3 and couldn't get an answer.
Lindsey
Wednesday 25th of July 2018
LAUREN! So many question. But first, congratulations? Did I miss some big announcement! Congrats my friend. I'd look for a whole foods prenatal with folate. I haven't looked for one in a year or two, so I'm not sure what's out there. I'll I gotta say for you is, one day at a time. You got this.
Ashley
Thursday 2nd of June 2016
Were you able to have a home/birth center birth ultimately? Were you on blood thinners? I desperately want to give birth at the Birth Cottage, but am concerned that my blood thinner treatment for MTHFR will preclude me from doing so. Haven't asked my OB yet (partially because I don't want to hear him say no, ha!).
Lindsey Morrow
Thursday 2nd of June 2016
I DID have a homebirth! I saw Dr. Hume and he cleared me for a homebirth. I recommend you do the same. Good luck!
Lindsey Morrow
Wednesday 4th of January 2012
Stephanie said... Glad you got some good info and are feeling a bit better about it all. December 13, 2011 6:04 PM
Lindsey Morrow
Wednesday 4th of January 2012
Lindsey Morrow said... Erinn - Not that I want a higher number, but isn't the number associated with bleeding disorder 3? I also get another point for my 2 consecutive miscarriages. December 13, 2011 4:14 PM
Lindsey Morrow
Wednesday 4th of January 2012
Lura said... I think it sounds promising! It would be totally worth the drive to Pensacola or Panama City to have a supportive OB sign off. The doc you saw sounds like he's against any home birth, but like you said, for now you're friends =) I know you will have excellent care with "the midwives." Good luck and you have my prayers! December 13, 2011 4:13 PM
Kara
Monday 2nd of January 2017
Can you tell me what doc you are talking about in Panama city please?