I went in for my standard estrogen/progesterone check today. When I returned home, there was a voicemail from my local nurse. I returned her call and it turns out my MTHFR results from last week had come in. I requested this test (after being told a few times in the past that it really wasn't needed) just as a precaution.
If you have the MTHFR gene mutation, it can cause pregnancy complications, birth defects and miscarriage as your body can't efficiently metabolize folic acid and it can cause blood clots in the placenta. It can be resolved by taking prescription strength folic acid and either baby aspirin or blood thinners. Unfortunately, most women don't know they have it until it's too late. In my situation of being completely out of embryos and this being my last shot, I could not afford this risk.
Well lo and behold, I tested positive for the gene mutation. I can't believe it. I have compound hetero MTHFR. They test two genes for this. Each gene consists of 1 copy from the dad and 1 copy from the mom. Both of my genes have 1 good copy and 1 mutated copy. This means that either my mom or dad also has MTHFR and needs to be tested for it. This not only affects pg, it also increases your risk of stroke, heart attack, things like that. Most with this mutation should really be on some type of blood thinner and prescription strength folic acid their entire life.
Once you test positive for this, they run a 2nd test called a fasting homocystine. If the homocystine is high, this means that the mutation is negatively affecting you. If it's low, you might be ok but need to keep a watch on it. My homocystine level won't be back until Fri or next week.
I'm a complete wreck. I don't even know if my little miracle is ok. My local nurse just called back and they are taking this very seriously considering all I've been through to get to this point. She completely caught me off guard by asking me to come in for an u/s tomorrow morning. OMG, I'm having an u/s tomorrow!!! I'll be 6w1d. I'm right at the point of maybe seeing a HB, maybe not. I really didn't want an early u/s because I know it will freak me out if there's no HB, but I guess that's what I'm getting. Oh God, please let little Seven being safe and sound!!!
After my u/s, assuming I'm still pg, I'll be transferred to a high risk doctor for a consultation to go over the results and decide on a plan of action. He will decipher if I need a prescription strength folic acid (Folgard) and if baby aspirin is enough, or if I need a prescription strength blood thinner. At least CCRM has had me on baby aspirin this entire time, I'm just worried about the folic acid. Whatever it is, I'll do it, I just can't lose this pg!
Today's estrogen was 798, which is a very nice level on it's own, but very concerning that it dropped from 3022. Of course my mind jumps straight to, OMG, did my body stop producing it's own estrogen because I'm no longer pg? My progesterone is a good 10.78. I'm still waiting to hear back from CCRM to hear their take on all this.
Please say a little prayer for us, or send us positive thoughts!
Update:
CCRM called and they are having me up my folic acid to 4mg until we get my homocystine level back. They encouraged me and said they really believe all is going to be ok. They also said my yo-yo-ing estrogen level is ok and it's going to vary. I feel somewhat better now.
You have our prayers and total postive thoughts.
ReplyDeleteI need you to keep that chin up and be as positive about this as you have been through this whole process with seven. He/she needs your good positive vibes. I truly believe everything will be okay and I thought you would have been with a high risk doctor anyway just for peace of mind and to make sure you are followed very close.
Let me know when you hear from CCRM
Love you and I'm right there beside you.
Sis
UGH!!! Jill, I'm so sorry that none of this is just smooth and easy for you :-( Though I do thank the LORD that you knew enough and that you pressed for the MTHFR test. Crazy that you tested positive, but good to know so early, and so glad we can be praying more specifically for your little bean. We will be PRAYING tomorrow for your u/s and I'll be stalking your blog for an update. What time is your appt? It is sooooo early for a HB but I will pray that you see one anyway, for your peace of mind. We love you and will be praying, praying, and praying some more for all of you!!
ReplyDeleteOh goodness lady.....another bump in the road is NOT what you needed....BUT....if it's any consolation, tons of girls on FF have the MTHFR and have only been on baby aspirin as a precaution and nothing stronger and have gone on to deliver healthy babies. You've been on baby aspirin the entire time, so find comfort in that that it's doing it's job:-) About tomorrow's u/s....as long as you go in there totally expecting to NOT see a h/b you'll be better off because it is VERY early yet...I had the same thing happen with two of my pregnancies and the 2nd time around I was a LOT more prepared and when I went back in not even a week later and saw that little flicker it was soooooo amazing. On another note....you totally "may" see the h/b tomorrow and that will just be an added bonus/surprise-) Hang in there....little 7 is just fine!
ReplyDeletelove ya!
Cathy
Best of luck for tomorrow's scan. I wonder why they don't just put you on low molecular weight heparin shots now till you get the full results back? I guess they must have reasons.
ReplyDeleteGlad you're on the aspirin and higher dose folic acid for now.
As much as the positive test sucks, I am glad you caught it and you are being taken care of for it! Good luck with tomorrow u/s.
ReplyDeleteI'm praying over you and sweet #7. Before Alyssa had surgery, I was tormented with worry about it. To the point of panicking and not being able to sleep. When I was reading my Bible God brought me to this verse and it just jumped out at me. Its Luke 2:52, " And the Child grew and became strong in spirit, filled with wisdom; and the grace of God was upon him". I looked back for the scripture the next day and days following, but no matter how much I looked I couldn't seem to find it. The night before her surgery, I was watching something and the lady quoted that scripture. I decided to look it up while she was having her surgery and there it was. God was comforting me and letting me know He had her and everything was going to be ok. So I give this scripture to you tonight. Speak it over your little #7 and know that this baby is being formed by God and He will take care of it. Trust Him and rest tonight. Jeremiah 29:11
ReplyDeleteOh Jill - After all you have been through you really don't need this stress.
ReplyDeleteWhat a good thing that they completed the testing and can put you on the right treatment. It sounds as though CCRM are handling it well but also think that everything will be OK. My thoughts and prayers are with you and little seven, x
I know there's scary stuff on the internet, but my CCRM doctor told me this doesn't cause miscarriages. Wishing you the best.
ReplyDeleteOh no, hang in there...seven is just fine...stay positive!! If you are interested, I had/have MTHFR with high homocystine. The high homocystine was discovered during my initial b/w then I was on baby aspirin and folic acid after the MTHFR was diagnosed(though not immediately as it took time for the results to come back). And while everyone is different, my 5 wk u/s showed a yolk sac and 6 wk a heartbeat (though I was warned it may not show that early too). I am sorry to hear all this Jill...again, I am sure all is fine! Will be thinking about you...Smiles, Heidi
ReplyDeleteYou are in my thoughts and I hope it all turns out great! Even if it's bad news about the MTHRFR it must be better to know so you can do something about it.
ReplyDeleteI am so glad they were able to make you feel better. I am dying for your ultrasound today and am guessing you didn't sleep very well last night. I really want to see a beautiful pic when I check on the computer later today! Prayers to you guys...and hugs.
ReplyDeleteYou know we are all here for you guys, but you have already answered your own worries... you said it yourself:
ReplyDelete"It can be resolved by taking prescription strength folic acid and either baby aspirin or blood thinners. Unfortunately, most women don't know they have it until it's too late."
The fact that you took the test and know NOW is great. Even though you don't like the results, at least you can do something about it, the doctors know and are taking every precaution, and now your parents know to get tested.
As I kept reading it seemed that you were letting the worry creep in there more than the positive. You stated the positive in the beginning. You know about it. You can do things to help it. That is great. There are tons more little positive posts above mine, so read those over and over. Positive thinking does wonders right :) I hope the ultrasound is amazing.
Just remember, if momma ain't happy, nobody is happy. So keep little Seven happy for us! Love you.
Dear Jill...
ReplyDeleteAnother bump in the road is the best way to describe it. As your Mother, I am hurting terribly for you. I am really grateful though that you got this test. For some reason you were led to that. Now that you and your doctors know that, they can stay on top of it. Please try your best to be positive. I honestly believe that #7 wants to be here and that you, Kerry, your doctors, and God will see to it that will happen. Always in my thoughts and prayers~
Love you as big as the sky. Mama
Oh Jill, you do not deserve this added stress and scare. I am hoping your u/s goes really well today - I'm sending you good vibes right now. I'll be checking all day to see how you and Seven are doing.
ReplyDeletePraying for you, Kerry and Seven and believing with you that this is just another bump in the road. You have come this far, and have overcome obstacles and hurdles in the past-- we don't understand why you have to face another... BUT, remember that while this diagnosis is scary news to you, it is not a surprise to the ONE who created you and created your baby. He will see you through. You and this baby will be a walking, breathing, miraculous testimony of God's faithfulness. Continue to trust in Him-- I know it's SO hard when the "cold hard facts" and medical statistics are staring you in the face. Know that there are so many of us praying over your womb, your little Seven and for your peace of mind.
ReplyDeleteLots of love and long distance hugs!
The Other Jill
Oh Jill! I am so sorry for this added worry and stress. I am thinking of you tons and hoping you see a beautiful h/b today on your u/s:) THinking only positive thoughts for you today and always.
ReplyDeleteAfter the update: I am so glad you got a reassuring call from your doctor's office. I know this all must be worrisome, but it is soooo good that you requested this test and that you are getting what your baby needs - you are an awesome mother already! I hope you find the u/s puts your mind further at ease.
ReplyDeleteIt's good you are catching this early and are on top of it. I'm sure everything will be ok. Don't be surprised if you don't see a HB at your u/s because it might be too early. Oh, and for the worrying, I don't think it stops for at least another 20 years! Remember, positive thoughts! You can use self-hypnosis to get through this! I would only say this to someone who had already seen Lynsi.
ReplyDeleteJust curious, could you post what made you decide to ask for the MTHFR test in the first instance?
ReplyDeleteHi Jill,
ReplyDeleteI do hope you are feeling better about all of this today. I'm sure that everything is going to be fine with little Seven! He/she is a trooper!
Something funny I wanted to share. I read somewhere that we are able to decipher words and sentences with the vowels missing, because our brain automatically fills in the missing ones. Well, whenever I see MTHRFR, I always think it says "motherf*%&er". I bet that's how you're feeling about it, huh?
Hopefully the u/s went well today!
Take care...
Stay positive! Keep telling your body and your baby that he/she will be fine. With some help, you can carry to full term with this condition. Many women with this problem have had succesful pregnancies! Never underestimate the power of your mind. I know somebody whose baby's heartbeat had stopped. She refused to have a D&C and opted to wait. She talked to her baby all day and night, telling it that it would be alright and it would grow to be a strong and healthy baby.3 days later the heartbeat returned and it came back to life, and she eventually had her baby! Think Positive! You're in my prayers! (HUGS)
ReplyDelete