April 19, 2015

Confusion

I'm officially confused and don't know where to go from here. For real.

First things first. I had my MRI on Friday and it was easy peezy compared to when I had one on my head. The only thing that threw me off was needing to get an IV. I didn't realize Dr. M. wanted a few images with contrast so it was unexpected. Thankfully she only had to poke me once. Unfortunately she had to dig around and I now have an awesome bruise.

The picture was taken Saturday morning but its much darker now. Yikes! But with that being my only battle wound, I really can't complain.

Onto the more interesting news. Dr. M. called this Saturday afternoon (I was shocked, too. Why is she calling on a Saturday?!). She said that all of my blood work was looking good so far. I asked about the Antithrombin III that the nurse told me was slightly elevated. Dr. M said it's nothing to worry about as it's usually an issue if you have decreased numbers. We'll just re-draw in 6 weeks.

She did, however, let me know that I am heterozygous for MTHFR. She quickly went on to let me know that it's nothing to be worried about because traditionally it was thought that both heterozygous and homozygous forms caused losses but now it's more commonly believed that it's only the homozygous mutation that causes losses. She said that I could continue the baby aspirin, but she doesn't believe this to be our problem. She also said that my homocysteine levels were "perfect". *More on this in a minute*

I also let her know that I had my MRI and asked when she expects to receive the images, which she believes should be this week. I asked if she thinks that surgery is still in the near future and she responded with an immediate "Yes". She said that she could feel something while doing the D&C and while the images during the diagnostic hysteroscopy weren't the best (because of all of the blood) she believes that she saw something as well. She, apparently, was ready to do the surgery after the ultrasound but had me do the MRI so that we can try to avoid a laparoscopic procedure. She wants the best view possible so that we will, hopefully, only have to do the hysteroscopy. But it sounds like maybe it will be in the next month or so.

Now, swinging back around to the MTHFR. I was actually the one who suggested that we test for it the day that we found out that nugget's heartbeat had died. I remember Dr. M. saying that MTHFR usually caused second trimester losses, but if it was something that I wanted to check, she was willing to. The reason I wanted to check? Because of my friend, A.

A had 7 losses, all in the first trimester. She finally found out that she had MTHFR and saw a hematologist who said that because she was heterozygous, there was no reason for her to be on a blood thinner. She was grasping at straws and a blood thinner was really her last resort, so her OB prescribed it for her throughout her next pregnancy. She ended up with a little boy who is now 1.

I texted her after speaking with Dr. M. and she thought it was crazy that Dr. M. didn't think this was an issue. We chatted a bit and then she asked if the doctor told me to stop my birth control pill immediately as it's very dangerous with MTHFR. Um, no. Apparently her doctor told her that he will never ever prescribe a birth control pill for her (and her IUD is hormone free) because it can cause even more clotting issues for those with MTHFR. I promised to call and ask Dr. M. about that on Monday.

Right now, I'm not 100% sure which route to follow but here's the thinking that E and I are going to run with (for the moment at least).
  • Call Dr. M. on Monday to ask about birth control and ask if folate supplements are needed.
  • Continue with the surgery route. The way I see it, if she goes in and does surgery and doesn't find anything, she's not going to scrape anything so I won't have any scaring. I would be out a couple hundreds of dollars and know one way or another. If she does find something, it gets fixed.
  • Once surgery is done, I'll discuss with Dr. M. her beliefs on blood thinners, such as lovenox, for someone like me with heterozygous MTHFR. The limited research that I've done has shown mixed views. If I'm unhappy with her answer, I'll get a second opinion from a specialist and go from there. 
Both E and I feel so overwhelmed with all of this. I know there's a very good chance that we may never get a concrete answer, but limbo stinks and this maybe, maybe, maybe pattern that we're stuck in is making it all that much more difficult.

Fingers crossed Dr. M. gets the MRI images early this week and it actually SHOWS something!!

2 comments:

  1. I have the same - MTHFR - and I used Lovenox the last two cycles. My RE had me stop it after the bleed, but I am still glad I used it. I know so many MTHFR women whose doctors said they didn't need the blood thinners but who went on to find success after using them.

    I also have done prednisone the last three cycles to control inflammation. It was another precautionary measure but I am still glad I did it.

    I hope that you continue to get answers - and that your rainbow isn't far out of reach. <3

    ReplyDelete
    Replies
    1. Thanks :) The MTHFR scared me at first, but I'm starting to feel more comfortable. I'm waiting to hear what I should up my folate intake to and once surgery is done, I'm going to explore her views on blood thinners. The way I see it, if it isn't going to hurt anything or be harmful, it's worth trying at this point. I do NOT want to have to grieve anymore babies.

      Delete