MTHFR

I am going to start playing the lottery.

In 2007 I went off birth control for the first time since around 2003. I had irregular cycles and by July of 2008 I was sitting in an RE office and diagnosed with PCOS.

In June of 2009 after 6 medicated rounds of infertility medications, and two d&c’s I was diagnosed with Chromosome Translocation.

Last year we decided to pursue Donor Egg IVF. In August we transferred two beautiful embryos but after a car accident caused a hospitalization for a severe blood clot in my leg, my beautiful embryos managed to attached but did not hang on. I had my third miscarriage.

In November we discontinued oral blood thinners (per my GP) and started BCP to prepare for a FET in January. In December I started having more leg pain, like before, and went back to my GP. He did an ultrasound which revealed I had another blood clot in my leg. I was started on oral blood thinners and referred to a hematologist.

The hematologist did another scan a little over a week later and immediately switched me to Lovenox, an injectable blood thinner.

Last week I went for my follow up with the hematologist. He casually started talking about how all of my blood work was normal, except my MTHFR. I was pretty sure I had seen one of my TTC sisters mention this before and just thought to myself, “well of course I have that too”. I started doing more research and realized he never told me any details about what “kind” I had. I called the nurse today and she said it was “homozygous“. Which from what I can tell means, the worst kind.

Honestly, it’s a good thing I have a decent sense of humor. At this point, all I can do is laugh. (Side note: beginning to understand the “Joker” character more in Batman).

My hematologist cleared us to do our FET as long as I stay on the Lovenox every 12 hours. I texted my RE nurse (because she’s amazing) and told her everything and she said she would meet with my RE and they would come up with a plan. I let her know there was no rush right now because we are STILL waiting on this court decision. I don’t feel that it’s smart to start our FET until this is behind us, regardless of the outcome.

Even with this diagnosis I am confident that our baby is in those 8 embryos, and I know my RE will take great care of me and having this diagnosis just means there is less room for error (or a missed opportunity to do something to help our chances). If you have any information or know anyone  who does please feel free to pass along the information. Also if you have any Lovenox to send my way, let me know, that stuff is liquid gold. I got my price for January and it is going to cost me $2361.32 for a 30 day supply 😦 Luckily my insurance deductible is $5K and once we meet that it’s free…silver lining?

As always thank you for your continued support and we will be sure to update when we get an update from the judge on guardianship of our niece.

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4 thoughts on “MTHFR

  1. Wow! Ok, I have MTHFR and am heterozygous, but due to my crazy, my OB was willing to let me continue my aspirin, Folgard, and Lovenox up until delivery. Getting this diagnosis was the best news. It meant we had something we could fix. I have no idea what it was that really kept Olivia inside me for 36 weeks, but I have no regrets about fighting to stay on the Lovenox to birth. But yeah, it’s crazy expensive. I did the generic, Enoxaparin, and had letters of necessity from both my RE and OB ready to go if the insurance company decided they weren’t going to pay. They did, thankfully, because everything was coded under pregnancy, not infertility. Email me if you have questions! I hope this is what leads you to success.

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  2. I was just going to direct you to WonkyGenes, but I see you already follow her. I don’t know anything about it, but I’m sorry you’re dealing with yet another issue, and that you’re still waiting on that decision! Hang in there!

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  3. I am so sorry there’s another issue to contend with. I hope the plan is solid and you can overcome this SERIOUSLY ONE MORE THING? thing. Oh man, just looked in my injection closet (sad I still have one) and I have two boxes of 40mg/.40 mL lovenox (generic) but they expired 03/16. I also have a box of 30 mg/.3mL that expired 10/2016. I don’t know how that works, but get in touch with me if expiration dates don’t matter as much as I think they do… I do not need it. I hope for all the best for you — for your court decision and for the FET.

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  4. Let your doctor know about insurance stuff. Sometimes they have samples. A doctor once pointed out that they focus on the care; the billing office focuses on the payment. The doctor often can help if they know the person needs help. But you can’t count on them to know about insurance stuff even if it’s all in the same office. Which makes sense.

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