Posts Tagged ‘MTHFR’

12th Pregnancy

Yes! 12! Can you believe it?? We weren’t planning on anymore, it just kinda happened – yes I know HOW 🙂 After trying for over a year for our 5th child, still breastfeeding, not even having regular periods, I just didn’t think pregnancy would happen so “easily”.

I’m now at 21 weeks. I have had 6 miscarriages and given birth 5 times to healthy girls.

I take Folic Acid and Baby Aspirin every day, but no Lovenox or other shots. I often thought that maybe MTHFR wasn’t the problem, that maybe I miscarry the boys, because we have 5 girls. Nothing else seemed to make sense. I miscarry when I take Folic Acid and Baby Aspirin and I carry to term when I don’t. It doesn’t make sense!

Imagine my surprise when we found out last week that this baby was a BOY! I really thought I couldn’t carry a boy and I was okay with that. A whole new world just opened up!!!

Anyway, I know I haven’t been blogging here or my other blog. I’ve been writing fiction books and taking care of my family. I do apologize for not being a better blogger. I still hope that between the blogs and information, I can help someone out there.

Have faith!!!!

3 Weeks Postpartum

My little one is 3 weeks old already. It scares me how fast time flies when you are a parent. I can already see so many changes in her. She stares right at me now. She cries when someone else is holding her and she hears my voice. She holds her head up a few seconds longer. She’s bigger, no longer fitting in the preemie outfits and inching her way towards the 0-3 month stuff instead of just newborn.

Why can’t this stage last longer? Why not a newborn stage for a year? We get the toddler stage for a long time, the preschool stage for a long time, the elementary stage for a long time, and the teen years… for way too long. I just want to cuddle this innocent, precious little baby for a little longer.

Her doctor called and wants to go ahead and do a VCUG at the children’s hospital to check out her enlarged kidney. Nothing I haven’t gone through before. But, I hate – HATE – putting my babies through this test. The specialist she spoke to said he didn’t mind the baby not being on antibiotics as long as we rule out the reflux. So, I’m waiting for a call back to find out when she needs to be there.

As for me, I’m back to my pre-pregnancy weight!!! I was 118 when I got pregnant with this one in April. However, I was 115 when I got pregnant in October 2008. So, I’d like to get back to that and drop the couple inches of FUN FLAB I have now.

I haven’t taken an aspirin or folic acid since I went into the hospital. I’m not sure how big of a risk I’m taking, but I was so sick of swallowing so many pills a day. I need to do some more research into it all. I think I’d like to get tested again, like getting a second opinion, and make sure I have this MTHFR disorder.

MTHFR

I’m trying to put together a post on MTHFR. It’s been difficult to figure out what I want to say and what medical information is important to give.

Let’s start with my personal brand of MTHFR 🙂  According to my lab work, I am compound heterozygous for MTHFR mutations. “Right…” You say. “What does that mean?” It basically means my body can’t absorb Folic Acid. I can’t metabolize it or Vitamin B9. Does that make any more sense? Not to me. Not even almost a year after diagnosis. I still don’t understand.

What do I do to treat my MTHFR? I take Folic Acid and baby aspirin. Oooohhh, big deal, huh?

From the research I’ve done in the past 11 months and from what the doctors have told me, it seems like something that is life altering. Yet, my life doesn’t seem that different. In fact, most days I wonder if taking this extra folic acid and aspirin are really helping. And helping what? I don’t feel any different. I’m 31weeks pregnant. I can’t stand taking pills. After taking 3 folic acid pills a day, I missed a couple and nothing happened. So, I put myself down to 2 folic acid pills a day (and the baby aspirin). Still don’t feel any different. I guess right now it’s a waiting game. I’m wondering if I should get retested after the baby is born. Maybe there was a mistake? Maybe I really don’t have it?

According to some websites, MTHFR can cause pre-eclampsia, placenta abruption, IUGR, stillbirth, having a baby with chromosomal abnormalities, recurrent pregnancy loss, clotting problems, strokes, hypertension, and heart disease. They say this is all hereditary. Yet, nobody in my family has these issues… except me. And the only ones I’ve had are miscarriages, possibly mild pre-eclampsia, and IUGR with one of my pregnancies. My other three full term pregnancies were fine. I was born with a heart defect, but I don’t think it’s connected.

People with MTHFR are supposed to be on a blood thinner when pregnant. My doctor recommended Lovenox injections. I refused. I took the chance that my body would take the extra folic acid and aspirin and do what was needed with it. And so far, it has.

 So, were my tests wrong? Or am I the only one in my family to have MTHFR? Are there other family members suffering from it, but not sharing the information? And what would happen if after I have this baby, I stop taking the medicine? Do I really want to risk stopping medicine and end up having a stroke? No. But, do I want to keep taking these pills for the rest of my life? No. But, I am lucky that this is the only thing wrong with me. I am blessed to be so healthy.

30 Weeks

I have hit 30 weeks! I had an appointment with my midwife this week. Everything is fine. I gained 10lbs between 20wks and 30wks and that’s what she likes to see, so I guess I did good there I measured 29 1/2cm so pretty much right on. My blood pressure was good and there was no protein in my urine – so no signs of preeclampsia (I was worried last week with my swollen feet and headaches, but it looks like it was just stress and the trip home for my cousin’s funeral). Baby’s heartrate was in the 140s, she was sort of vertex, but sort of transverse LOL! She’s just like her sisters, she likes to flip around.

I refused the glucose test and she said she’d draw my blood next time for the repeat CBC and all that fun stuff.

Right before we left for NY, I had an ultrasound. I was a little over 28 weeks. They called with the results while I was away. On the phone they told me I was 1cm dilated already. But, the report says .75cm. So, the midwife did look inside and said she could see it was a tiny bit dilated, but not to 1cm yet. So, the good news is that I’m not dilating anymore right now. She said who knows how many people go around dilated at 30 weeks because normally OBs and midwives don’t check at that time.

The second thing the report showed was mild dilation of the kidneys. Nobody is worried about this. It’s something that often clears up and if not, I’ll just take the baby in to have her kidneys checked when she’s born. My oldest was born with a kidney problem and it’s all okay.

Third… the placenta. It’s still only 2.1cm from my cervix, so it’s considered low lying, but not previa. They were hoping it would migrate up, but guess it’s being stubborn. My midwife said it might be because it’s posterior. She wants to talk to some other midwives about it and get their opinions. But, her gut tells her it’s fine and she’s not worried about it. It might be a bit of a challenge with my MTHFR status, so we’ll be keeping an eye on the bleeding in labor. I spoke to my old doula who agrees with her, that as long as it’s 2cm away, a vaginal delivery is fine.

The research I’ve done online seems to go either way… some say 2cm is the cut off. Anything less and it’s a c-section. Other sites say it should be 3cm. Some say you shouldn’t do an ultrasound to check the placenta until 35 weeks or so because it still has a chance to migrate. Some say home births are too risky. But, I’m comfortable right now. If my gut tells me different, I’d be switching. (I also looked up the placenta location in my other pregnancies, they were all posterior, but none were ever marked as low lying).

Anyway, I see her again in 2 weeks at her office and then 2 weeks after that, she’s coming here again! I love when I don’t have to go anywhere. She said something about being full term in 6 weeks! WOW! Just 6 weeks. And being the holidays, time will fly even faster!!!!

Stupid, Shiny Follow Up Appointment

I saw the Hematologist again last week. I’m honestly not sure why I kept this appointment. Must be the alone time I get when I go. As nice as this doctor is, she seems to want to only bring me down. Although, there was nothing new to report, she reiterated how important it was that I keep coming to see her, get blood work done every few months, and see a high risk OB when I get pregnant.

WHY? You ask. I asked that too. And there really isn’t a reason. She claims that MTHFR can raise my risk of getting blood clots. But, I haven’t had one yet. Or any signs of one. And all my clotting tests were fine. So, no, I will not be running to a high risk OB when I get my positive pregnancy test. I will be calling my midwife, and probably my regular OB for an early ultrasound.

This particular doctor does know that I want a homebirth, whether she remembers or not, I’m not sure. I believe most doctors are biased. They just don’t get people like me, people who want to have their babies at home. They want to force hospitals, medicine, and interventions on us and I am really sick and tired of it. It’s one thing to NEED to go to a high risk doctor and hospital, but just to make my hematologist – who probably doesn’t remember my name the next day – sleep better at night, I don’t think so.

So, that’s my stupid, shiny report from my stupid, shiny follow up with my stupid, shiny doctor. Wonder if she drives a stupid, shiny Volvo?

My Miscarriage Experiences

A reader asked me about my miscarriage and I thought it was important enough to make another post about it. Miscarriage hurts emotionally and many people have a hard time talking about it. I still get teary eyed, but I know it has to be talked about. That’s how I heal, and that’s how other people learn. I don’t mind telling about my experiences. I only hope it helps somebody.

First, I have to say I’m not a doctor or a health care professional. I can only say what happened to me and what my doctors have told me.

I think the most important thing to know is that not all miscarriages are the same. The internet is contradicting, but sometimes it has to be. Even with my four miscarriages, none of them were exactly alike.

This last one in November is fresh in my mind, so I’ll start there. We tried to get pregnant for 9 cycles and with the help of Clomid – something I have never had to use before – we conceived. I tested positive around the time I expected my period. I was never one to get a positive test before 12 days past ovulation. 2 weeks later I saw just a tiny bit of pink when I wiped. It was so little, someone else may not have even noticed. I did, probably because I check the TP after I wipe. This is something the other miscarriages “taught” me.

I freaked, I prayed, I waited. No cramps came. No pain. Just more pink streaks on the TP. At this point, I noticed that my breasts didn’t hurt anymore. After 12 hours of waiting the pink started turning more of a red color. Not a constant flow, just spotting every time I wiped. I decided to take another pregnancy test and when it was faint, my heart dropped. No longer two dark lines… It was Sunday. I didn’t know if I should go to the ER, urgent care center, or just call someone. I called both my midwife and my OB. When the OB called back, she said there wasn’t any point in going to the hospital, they won’t be able to tell anything or do anything. This was just a wait and see. She also said there was a chance that because I was on the Clomid I conceived twins and was losing one of them. As horrible as that was, I clung to that “hope” for the day. I spent the day in bed, watching TV, praying, and cuddling my kids.

No cramps ever came. However, I felt pressure on my cervix. This was something I often feel when I get my period. I took Motrin because it was uncomfortable. The bleeding picked up, I even started to pass clots, and as much as I tried to hang on to that hope, I knew it was over. I’m not an overly optimistic person. I try. But, I find myself thinking the worst and praying for the best.

I went to see the OB on Monday. I still had heavy bleeding. She said my cervix was closed, which almost made me hope again, until I found out that didn’t mean anything. They didn’t do an ultrasound. That kind of made me mad. They did draw blood. My HCG levels came back at 26. I had to go back Wed and Fri to have it done again. They turned out to be 18 and 15, respectively. I ended up having to go back a couple weeks later until my levels went down to under 2.

I continued to bleed and felt a lot of pressure, but no cramping. NONE. Remembering the pain from my 2nd miscarriage, I was grateful not to be experiencing that again. But, before we get to that one, there’s was #3. This was the “easiest”. I had known I was pregnant… I could feel it. My temps were still high and I was about to test when the temp dropped suddenly and I had cramps and bleeding. I went in to see my midwife who took blood. My levels weren’t high enough. She called it a chemical pregnancy. I didn’t experience a lot of pain – it was like a normal period with normal cramps. There weren’t any clots. It was a little easier to deal with because I hadn’t been pregnant very long.

My 2nd miscarriage was by far the worst. I was 6 weeks along and started cramping first. A LOT of cramping! It was 100 times worse than my period. I stayed in bed begging God to stop the pain. Finally, I started bleeding. And on Sunday, I passed a big clot. Again it was the weekend AND the holidays, the doctor said if it was a miscarriage, there was nothing we could do. So, I stayed home and went to see her Monday when she confirmed that it was a miscarriage. They did the blood work to make sure the levels dropped enough. I think they did, because I don’t remember having to go in more than twice. The pain of this one was very hard to deal with. It is what I picture to be a “classic complete miscarriage”. When someone says miscarriage, this is the one I think of.

My 1st miscarriage was my 1st pregnancy, so I had NO idea what to expect. I actually didn’t realize I was pregnant until I was miscarrying and that was at 8 weeks. I was young. I didn’t understand. The cramps were regular period type cramps, the bleeding heavier than usual, and I remember some clots. Other than that, thankfully, I don’t remember much.

I have been very blessed that I have never needed a D&C.

So, as you can see, each one was a little different. I’m not sure there is a NORMAL way to miscarry. I have been told if I have any cramping or spotting, I should call the doctor right away. So, that is my recommendation to any of you reading this. Don’t worry about what time it is or what they’ll think of you – CALL your midwife or OB or even your family doctor.

With that being said, I know of many ladies who bled and/or cramped in early pregnancy who went on to carry their baby to full term. So, there is hope even if you are bleeding or cramping. Don’t give up that hope!

Back to my most recent miscarriage, because it was my fourth, the doctor agreed to do some testing. They usually don’t until you have had 3 miscarriages in a row. I never had that. But, I’m thankful the doctor wanted to do the testing. I never thought I’d know WHY I lost any of these precious babies. But, the test results came back and there are possible reasons. No one can say for sure that this MTHFR mutation is why I keep miscarrying. And no one can say for sure that the positive ANAs were the cause. It seems that my body is somewhat responsible for these miscarriages. I really wish doctors would test women who have a miscarriage for some things. At least the folic acid. That’s an easy test with an easy fix. I always knew folic acid was important to take, but I thought what I took in the vitamins was enough. I knew if I didn’t have enough it could cause my baby to be born with spinal defects, but I didn’t know that not having enough could cause a miscarriage. Why not test every pregnant woman for the MTHFR mutation? Or at least test for it when someone miscarries the first time. To think that I may have been able to save my babies… if only I had known.

I hope sharing my experiences can help. Just remember every person, every miscarriage is different. Please go see your midwife or doctor if you have any concerns.

To the reader who asked, I hope this helps. I pray that you are not having a miscarriage and everything is fine with your precious angel. Can you get in to see your doctor any sooner than Friday?
God bless.

This Time, A Rheumatologist

There is never a dull moment around here. Lately, my weeks have been full of doctors, needles, and worries. Today was no exception. I had to see a Rheumatologist. I was once again pleased that I found a doctor whose office was easy to get to, clean, and the staff was efficient. The doctor came in within a couple minutes of the nurse leaving. He had a good bedside manner. He was kind, caring and nice.

Of course, I got no answers. I didn’t expect any, but I can always hope. He did a full exam from head to toe and didn’t find anything “wrong”. My liver and spleen seem to be in their correct positions! No rashes, no swollen joints, no dry eyes! So, that’s good news.

The doctor then told me that although I have no symptoms, he would run more specific tests to see if I have Lupus or some other things. He said that because I have four living children, that he thinks the reason for my miscarriages were more likely that something was wrong with the baby, rather than something auto-immune. But, can’t rule anything out yet. And of course, I have that MTHFR mutation.

He ordered more blood tests and said he’d see me back in two weeks. Yay!! More doctor appointments! Can’t wait. I had to go across the hall to the lab. Thankfully, they had a bed for me to lie on. The lady had trouble with one of the doctor’s orders and had to call the office only for them to say they’d have to call back. So, we waited and waited and finally the call came and we got on with the fun stuff. TEN tubes of blood and 90 minutes later, I was done!!!!!!!!!!

Now, I wait again. I hate waiting. I’m not a patient person. I just hope that I get some GOOD news in two weeks when I go back to these two doctors. Please continue to keep me in your thoughts and prayers.

Another Appointment, Still No Answers

Today I saw a Hematologist. Her office was in a brand new medical building near the hospital. It was clean!! I like clean doctor’s offices. Their office was almost empty, only one other lady was in the waiting room. The nurse called me fairly quickly and within a few minutes, the medical assistant came in the room.

She asked me a bunch of questions that were hard to understand because of her accent. So, who knows what I answered yes to – LOL! A few minutes after she left, the doctor came in. She was very nice, I liked her immediately. She went over my history, talked about the results of my blood tests and what she wanted to do now.

She repeated the same old “folic acid deficiency” and “possibly blood clots being in the umbilical cord or placenta and causing the miscarriages”. She said that my positive ANA tests would be more handled by the Rheumatologist, but, that she and the Rheumatologist kind of overlap. After hearing about my LOVE of needles, she decided to let me get stuck only once. She gave me a list of all the tests she wants done. I’m to take that to my appointment on Friday and add it to whatever tests they want!!

She asked how many more children we wanted and I answered “just one more”. She laughed and asked how many times I said that 🙂 She asked how likely #6 was and I said that 5 was enough. Depending on the results of my blood work, she said she may put me on Heparin or Lovenox if I was to get pregnant and if we’re going to be TTC, then possibly even before I get pregnant.

Apparently, THIS makes me high risk (if I get pregnant). THAT means no homebirth with a midwife. Now, I haven’t ruled that out yet. Because I don’t know for sure WHAT it is I have and if they’re going to prescribe a blood thinner (other than the baby aspirin). But, it’s something to think about. I told her that I’ve used midwives and had natural births and I wanted a midwife and a homebirth. Her jaw about hit the ground! After she picked it back up, she said she wasn’t against midwives and homebirths, but I would be risking my life having a homebirth.

I still have to wait to get more answers. I may not need the Heparin, I may not have Lupus, maybe I just need extra Folic Acid. I’m trying to be optimistic.

I guess I need to decide… will I be able to give myself daily injections or even let dh do it? I hate needles. If I’m not laying down when I get blood drawn, I faint. Can I do that? And secondly, if I can’t have the birth I want, if I’m going to be forced into using a high risk ob, a hospital, maybe induction or c-sections… do I want that?

I want another baby so much my heart hurts. But, I have been blessed with four beautiful little girls. Maybe that’s what I’m meant to have. Maybe I’m not meant to have more. And maybe this last little angel was to help me find out all this stuff that is wrong with me. And yet, my arms yearn to hold another little baby, nurse her, and love her forever.

As my dreams fade away… I just want to go back to not knowing any of this.

Today’s Appointment

Today I had an appointment with my regular primary care doctor. I had called her last week after my appointment with the internal medicine doctor – the one I couldn’t stand. She had looked over my file and agreed that I didn’t need the internal medicine doctor and I could just see her.

In I went, hungry, because I had fasted since midnight in preparation for blood work. The doctor, who I have always liked, was wonderful. She listened to everything. She talked to me. She even promised to get me some answers.

She stepped out of the room to call a hematologist herself. When she came back in, she said the hematologist wanted to see me, that this MTHFR mutation was more than just folic acid. She explained it a little to me. But, it’s still hard to understand. Yet, easy at the same time. If that makes sense.

Her office actually made the appointments for me. Tomorrow I see the hematologist and Friday I see the Rheumatologist (for the positive ANAs). Wow! They sure are quick and thorough. Now, I’m wondering WHY I didn’t just go to her in the first place.

Before I left, she made sure I knew to call her if I had any questions or concerns, to talk about results or anything else I needed.

I’ll update again tomorrow!!!

My Test Results

I went to the doctor Monday. This always ends up being an adventure. I have to figure out what to do with the kids, how to get there (because it’s never easy), and try to remember everything I need to ask. The office I go to isn’t spectacular in any way. It has chairs and a TV that’s never on. There is even a sign asking you NOT to bring your child with you, because of space issues. I waited approximately 45 minutes in the waiting room – good thing I brought a book. Once back in the room, I tried to figure out if the people on the street could see me through the window. Wouldn’t that be awesome? An OB/GYN office where they could literally see IN. It was cold and boring in that small room. I probably waited another 10 minutes, but finally my doctor came in.

My doctor is nice. She seems to want to help, seems to care, tries to take a little bit of time – but always seems in a rush anyway. She sat down and asked me how I was. HOW DID SHE THINK I WAS? I had been waiting since last Wednesday for answers. I have been stressing over WHY they couldn’t tell me this stuff on the phone! I figured I was dying of something!!! So, I politely answered “Stressed and nervous.”

She smiled and said she understood. Then paused long enough for me to get annoyed and I asked if I was dying. She said no. PHEW!!!!!!!!!!!! Then she proceeded to tell me the results of my blood work. She said I have two copies of the MTHFR mutation (Yes, I know what that looks like). Apparently, it has something to do with Folic Acid. My body doesn’t make it or doesn’t metabolize it or something. So, I need to take 4mg a day. What fun. I guess it can lead into other things; I need to do some research on that. The other thing that is wrong with me – as if one wasn’t enough – my antinuclear antibodies (ANA). They came back positive. What does this mean? Beats me! It’s usually a sign that someone has an autoimmune disorder, but I have read that in rare instances it can just be positive. Or it can be positive now, but I may not have symptoms of anything for years. It’s almost like a ticking time bomb. Just waiting for the right moment to explode. This includes diseases like Lupus (which does NOT run in my family) and Rheumatoid Arthritis (which my mother has). Thankfully, I have no signs or symptoms of anything – not that I know of.

The doctor said she believes my miscarriages are due to the Folic Acid deficiency and taking the Folic Acid should help me to keep the baby next time. I also have to take Baby Aspirin every day. So, that’s 5 pills a day – good thing they’re small! She told me we can TTC if we want to as long as I’m on the Folic Acid and Baby Aspirin.

Then she said I needed to see an Internal Medicine doctor and gave me a name. Supposedly, this doctor will be able to figure out what the positive ANA means and if she can’t, I have to see a Rheumatologist. This is sure to mean MORE blood work – UGH! I HATE needles!!!!!!!!!!

I’m certainly not at peace with any of this, but I’m so relieved that it’s not more serious. It’s apparently something that will need more testing and I’ll probably have to be monitored.

Oh, and the bump on my cervix, she didn’t look at it, but was somehow able to say that cysts on the cervix are normal for women who have had babies. Great. I’d feel better if she had at least LOOKED at it.

My midwife reminded me of this verse: II Timothy 1:7. “For God has not given us a spirit of fear, but of power and of love and of sound mind.” I’m trying, Lord.