Everything’s fine

 

Atacama desert, Chile. If even the driest place on Earth can bloom with some rain, won’t by barren womb nourish a baby to term with the right help?

 
During our last appointment with the RE, when our baby was confirmed dead, my husband and I had our blood drawn for RPL panel testing. We have an appointment with the RE to discuss the results on December 15 (and hopefully get a referral to the only Reproductive Immunologist in the country). 

However, the results are already in and available online, on the health system website. This is what I can see:

  • Beta 2-glycoprotein 1 Ab IgG: 2000 e/L (ref.: below 10000)
  • Beta 2-glycoprotein 1 Ab IgM: 2000 e/L (ref.: below 6000)
  • Cardiolipin Ab IgG: below 1000 IU/L (ref.: below 10000)
  • Cardiolipin Ab IgM: below 1000 IU/L (ref.: below 10000)
  • C-reactive protein: 1.8 mg/L (ref.: below 6)
  • Coagulation factors II, VII, X: 0.87 (ref.: 0.70 – 1.30)
  • Karyotype: normal (both mine and my husband’s)
  • Lupus anticoagulant: 0 (ref.: 0)
  • Prolactin: 21 ug/L (ref.: 2 – 23)
  • Anti-thyroglobulin Ab: 1.1 IU/L (ref.: below 0.7)
  • Thyroidperoxidase Ab: 8000 IU/L (ref.: below 11000)
  • Thyrotropin (TSH): 1.9 mIU/L (ref.: 0.3 – 4.0)

I was very surprised about the anti-Tg result. My thyroid levels has always been normal and I’ve done this test before in January, after the third loss, and results were normal. This sparked many questions on my mind:

  • Could this result alone explain our losses?
  • Does it mean my metabolism is not able to handle pregnancy or is it an indication that my immune system is overly active?
  • Are these results even ‘abnormal’ enough to mean anything?
  • What would possible treatments be? Thyroid medicine or something else to calm down my immune system?
  • Were the results abnormal this time because I was still technically pregnant (though the baby was dead) when the test was run, or is it because my immune system is becoming more aggressive at every pregnancy?
  • Is this a new clue or the answer we have been looking for??

I can’t really compare the two results, from January and October, because it seems the test methods are different. My result from earlier was: below 1.0 IU/ml (ref.: below 4.11 IU/ml). 

All these questions dissipated when I received an email from the RE. It was very short, simpling stating: all results are back and are all normal. In other words, everything is fine, it’s just bad luck, just try again.

I’m not sure what to do with this. I can’t hear it’s just bad luck any longer. I need answers. I need solutions. I need a plan that consists of more than just try again. I’ve played in this casino for too long now, I need to know my real odds, I’m tired of playing blindly.

I’ve done everything doctors have asked of me. With my other losses, they insisted I was not a ‘recurrent miscarrier’ because I hadn’t lost enough babies to qualify. They blamed my egg quality and recommended IVF. I followed through and after very good fertilisation rates and 6 high grade blastocysts and another loss, they’re running out of excuses. Though they keep insisting everything’s fine. Fine to whom?? 

I’ll call the fertility clinic Monday morning and try to reschedule the appointment to this month. Then I’ll push for that referral. They can’t say no, I fulfill every criteria of their own stupid rules. I’ll keep fighting for an answer because there’s nothing else I can do. 

I can’t just try again, when I have no reason to expect a different outcome for my babies and I can’t keep being responsible for their deaths. It’s weighting on my conscious, not the RE’s. So everything’s NOT fine.

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24 thoughts on “Everything’s fine

  1. Aaaagh. It is very definitely NOT fine. I don’t think that is a reasonable thing to say! I’m sorry to hear you are not getting answers – that must be so frustrating and upsetting. x

    Liked by 1 person

  2. It took me 5 losses and the decision to pay out of pocket to go out of country to a reproductive immunologist before we found out our reason. We got to the same point you are at and just couldn’t take one more doctor telling us to just keep trying until we get lucky. So, I 100% understand your frustration! I really hope you can get that referral!!

    Liked by 1 person

    • Thank you! We have reached this conclusion too. In case we don’t get the referral (or we’re not satisfied with the care here) we’re going to a specialist abroad. I’m already looking at some options. I just can’t take this any longer.
      I’m sorry in your case ‘the answer’ didn’t come with an easy solution, but I imagine it helped you decide on another path for your family. I hope you’ll get a placement soon and have your baby on your arms. Thanks for the support!

      Liked by 1 person

      • Without a doubt going to the specialist was the best decslision we made because it gave us an answer and gave us the ability to embrace adoption with open arms and without potential regret. So for us, the outcome may not have been what we had imagined, but it was eaxacty what we needed. I hope you also find your place of peace, whatever that means for you! And good for you for taking the steps you need to get the best care and to get answers!

        Liked by 1 person

  3. I know what you mean. I’m alternately hoping the genetic testing we are waiting on reveals an answer, since there must be a reason I’ve had three losses, but I’m also afraid it will be a terrible answer and “the reason” will make this journey that much more difficult and expensive. Double edged sword, I guess. But I need to know and for all the reasons you’ve described. It stinks being told to “try again” when all your own experience tells you that it won’t matter and it won’t help. Sorry you are going through this too 😦

    Liked by 1 person

  4. I came across your blog and I am so very sorry you are going through all of this. It is such an isolating and life changing experience. I spent 6 years trying to have my son and after several miscarriages (and 9 iuis + 2 ivfs), I met my naturopath who told me to stop eating gluten. My thyroid was considered normal by my RE at that time, but she said a tsh of higher than 2.5 was not actually normal. I went on to have high antithyroid antibodies as well (which it looks like your labs now show), but not at first, so I now have the official diagnosis of Hashimotos. Anyway, it was 3 months after going gluten and dairy free and removing other food allergens from my diet that i was finally able to get and stay pregnant after so many years. So, i don’t know if you have ever tried going gluten free but with the antibodies I would give it a chance (especially since it is practically free) and also trust your gut. Dont let a doctor tell you that all is fine if you don’t feel that it is. I always had a feeling that there was just something off with my hormones and i was right. I do also have the MTHFR mutation and i believe that having blood thinner from the time I tested positive for pregnancy helped. With the immune issues, I also had intralipid infusions once I was pregnant. I finally had my son 2 months before I turned 39. Please feel free to email me with any questions. So sorry for such a long comment! I just felt compelled to share my story in hopes that it could possibly help. I have been where you are and it was so much more difficult than anyone who has not been through it can even imagine. I wish you the best.

    Liked by 1 person

    • Thank you so much for sharing. I really appreciate it. I’m so sorry for your losses, it’s so heartbreaking, but I’m so glad you have a son now.
      I haven’t tried going gluten free yet, maybe that will be my next step. I’ve ordered some online genome testing to check on the MTHFR mutation among other things (since the doctors won’t order it), so I’ll know that soon.
      Thanks again for your suggestions, I’ll consider them carefully and discuss with the doctors. I’m also considering finding an specialist abroad if the doctors here continue to ignore me.

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  5. I had similar experiences and a similarly baffling and borderline thyroid result. And was also told bad luck was the cause. My spider sense there was more to it and so we tried donor sperm for a year, still nothing. By that time I knew in my gut that whatever was wrong was undetectable (to today’s technology) but existent all the same. That’s when I started shifting the conversation to adoption, donation etc. Everybody thought I was being too extreme but after 5 losses I was done with trying with my eggs, which were the common denominator. I don’t know what’s going on for you but I do know it’s worth it to trust your gut. Hugs.

    Liked by 1 person

    • Thanks for sharing and for your support. I’m so glad it worked with the donor embryo for you.
      I sometimes have doubts if science is evolved enough to give the answers I want, it might be that I never get to know why, or it never works… I still have hope, though, since I haven’t seen a recurrent miscarriage specialist yet, I’ve only been to ‘usual’ REs. And my gut does tell me something’s wrong, so I’ll keep pushing.

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  6. I’m sorry this didn’t bring answers. Same thing happened to me/us but then when we had testing done by a Reproductive Immunologist the picture looked very different. Can you get a referral to an endocrinologist to talk about the anti-thyroid antibodies result and see if there’s anything else the endo can test for that might help you? I’m so sorry you keep getting told to practice insanity

    Liked by 1 person

  7. I find even having a reason for my recurrent miscarriages still makes me very scared to try again. But it is relieving to know what we are up against. I just hope there’s not something missing in the work-up. I second the above comment about going to the endocrinologist. Your doc probably has good reason to say everything is normal even though you clearly have a lab result that is outside of the range. However, that doc should be pushed as to why he thinks that is normal so you know (sounds like you’re already going to do that!!). Wishing you all the best!

    Liked by 1 person

    • Thanks! I agree, I’m gonna ask my GP to give me the referral to endocrinologist, I want to understand why that result is not important.
      I’m sorry your answer was not comforting, I hope you and your doc can address the egg quality issues.

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