What’s next?

I am exhausted.

After getting my lower betas on Saturday I made a decision some may find strange – I was going to continue the progesterone for one more night.

Not because I thought there was hope. But because I wanted another day to process. I also thought I might be better off if CD1 was a Monday.

I wasn’t sure what my RE would want to do. I know frequently a miscarriage benches you for 1-3 cycles, but usually it happens later. My RE originally told me that they don’t consider anything under 5 to be pregnant. And I only ever made it to 6.

So as devastated as I am, I was hoping not to be benched. The previous plan was a radiological Hyst CD5-12 and clomid CD3-5. I thought that if I started bleeding Monday, I could have enough time to talk to my RE, make sure that was ok, and then put the plan in action before CD 3 when I needed to start meds.

My body had other ideas. Despite taking my last dose of progesterone Saturday night, my body knew. I started bleeding Sunday morning. This just reaffirms in my mind that all the pregnancy symptoms I experienced Thursday-Saturday mid-afternoon were real. That was when my HCG was at it’s (very, very low) peak, and the second it dropped – my body knew, my symptoms stopped, and the bleeding started.

And like I feared, I believe I am benched.

I called asking for the plan today, and all I could really get from the rambling message left by my RE (I missed it by a minute and couldn’t get him back on the phone!) and the nurses was I need to come in for a consult. *sigh* 4 hours in the car for an appointment that probably won’t even involve being probed.

They also told me that my repeat loss tests are back. They didn’t tell me the results, just told me they were in and I should make an appointment to discuss. Well I hate that. Having my test results and not telling me feels a whole heck of a lot like taunting “I know something you don’t know!” as a kid. I can’t stand not having my own test results. It’s why I now pay for a service that turns faxes into e-mailed PDFs so that the labs will send them to me at the same time as my doctor.

But I hadn’t done that yet when I had the 9 vials of blood drawn 2 weeks ago. So I got my ass in the car and went to the lab to pick them up.

(While I was there I got a repeat beta that I couldn’t get any one on the phone to tell me if I needed. My RE’s office sucked with communication today. But I assumed that too much info was better than too little and submitted to the incompetent vampires once more.)

(Actually, I have some favorite lab techs, and they have been awesome this week, that name just sticks from when I was getting blood drawn a lot as a kid.)

On the 5 pages of results, most things look normal except the last – MTHFR A1298C homozygous mutation.

Well crap.

In addition to being linked with miscarriage, there is also some inconclusive evidence that it could possibly have caused Noah’s defects. Which is to say, when it ask Dr. Google, I find a lot of posts, and also medical journals saying that they have seen a strange number of cases of dandy walker and/or hydro with MTHFR, but there are no conclusive studies.

It is good to have a potential answer, but it also breaks my heart to think that something in my DNA is hurting my babies. To think that it could have been prevented, and wasn’t.

And then there is the fear of this happening again, and again. Sure there are treatments for MTHFR, but they are not guarantees. I know someone who even with treatment had 7 losses before they found a protocol that worked.

It also calls into question how many of my “evaporation lines” that I seem to get far too often were really other early losses. Quite frankly, I think it was a miracle that we even knew about this poor baby. The perfect storm of some super sensitive tests that were more sensitive than they should have been and/or some fluke false positives. If I hadn’t had that positive digital, I wouldn’t have had another beta and would have been told to stop progesterone then. How often have I assumed that a faint line was an evap when it never got darker? Could it have just been really low, slow rising betas that I gave up on without a blood test? In January I got a faint line that went away in 48 hours followed by a negative beta. I was told that if it had really been a CP it couldn’t have dropped so fast. But I still had clear but light lines Thursday morning when my beta was 4. And today my beta was 0. Was that a CP? How many have we really lost?

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7 thoughts on “What’s next?

  1. Oh hun I’m so sorry. I ask myself the same question because I know there were likely many more thanks to faint lines and delayed periods over the years. It scares me to think about it.
    Wow MTHFR. It must feel good to know but I understand how you must be feeling about prevention in the past, the what ifs. Be kind to yourself, you’ve done the best you can do. You can do something about it now and it’s common enough that treatment usually fixes things straight away.
    I hope you’re not benched for a couple cycles. I never listened to them bang on about that but may have paid the price several times. It’s hard to know but one thing is for sure, Nacho was the cycle after #6 so miracles do happen. Supporting you whatever your decision. Hugs xxx

    • Thank you. It’s nice to know someone understands. So many times I’ve been told that if I was really pregnant the lines would get darker, and ridiculed for “imagining” lines. But I know what I see, and I am not the only one who sees it. I just told myself they were evaporation lines and not to trust them, but now…

  2. This sounds so hard. I still believe I was briefly pregnant in January but I have nothing to prove it. Not even evaporation lines. For the most part, I think our bodies know best.
    As for the MTHFR, I hope you find a protocol that works. Knowing about it has to help a bit.
    Hang in there. I’m sorry the rainbow quest is so hard on you.

  3. Oh wow… I was so sorry to read about your precious Noah.. and now this. I am sorry. That is a lot to process. All the best.

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