Can of worms

So much has gone on in the last week. I don’t know where to start. Today I’ll try to recap the latest from all the recent investigations.

Test results are back. Here’s what’s been done, or retaken in the last five weeks to investigate the reasons for our multiple losses:

uNK cells via biopsy
Leukocyte Antibody Detection
HLA DQ Alpha Antigens
NK Assay Panel
TH1/TH2 Cytokine Ratio
LFT Liver Function test
Thyroid Antibodies
Thyroid function
Anti phospholipid antibodies APA
Karyotyping (still waiting for that one)

Many of these came back normal. Four did not.

1) Endometrial biopsy came back borderline abnormal. uNK cells present, not super present, but enough to possibly cause issues. Treatment so far will begin with progesterone only, no steroids yet which I am thankful for. But steroids might be introduced after BFP, if that ever happens.

2) My anti cardiolipin antibodies in the APA screen came back positive. These produce an autoimmune response that prevents the fusion of cells that help the embryo to attach firmly and grow deeply into the womb lining. I’ve been tested for this before and it was negative so will be tested a third time to confirm it. In the meantime this will be treated with Clexane injections at BFP in addition to the 150mg aspirin for the increased clot strength I already have. This could also explain our RPL.

3) Leukocyte antibody detection panel also came back abnormal. This is when the mother’s body has an inadequate response to the growing embryo and will be unable to produce antibodies that protect the embryo from rejection and stimulate growth of the placenta. We haven’t had a chance to discuss this with our reproductive immunologist yet but we know from previous discussions with him that the treatment is LIT. White blood cells from Hubs are injected into my body to get it to produce blocking antibodies that will protect the embryo.

These three results are manageable. We can work with these. Sadly though they are all dependent on a BFP. But the next one is the one that could prevent us from dealing with the first three at all.

4) AMH. It plummeted from 12.9 to 2.1. In 8 months. For those of you in North America that’s 1.8 to .29. A shocking drop. This is most definitely NOT good. And we don’t know why. I spent much of that time pregnant, how can that drop so quickly? How can that number reflect my egg reserve if no eggs were spent for over four of those months? At this rate they’ll be no egg reserve by the end of this year. I am terrified. After hearing the news a complete meltdown of crying, destroying and dry heaving took place.

Unfortunately my GP who delivered the news doesn’t really understand the role AMH plays in fertility. She quite bluntly said I’m likely no longer a contender for IVF at all, especially since we won’t be able to start it until January (ie the drop is so rapid that next year will be too late). We’ve been at the top of the NHS IVF list for months but we put it off 1) because we were already pregnant and 2) because we were hopeful since I could get pregnant that IVF wouldn’t be necessary.

How could I go from being ‘super fertile’ to having nearly no viable eggs left in such a short time?

I frantically researched AMH when I found out, as I did back in January when a consultant flippantly said donor eggs was our only route (we had two BFPs since that day BTW) and its role in infertility and came up with some really conflicting results, particularly when women are able to conceive naturally. Our consultant at the RPL clinic advised us previously that AMH wasn’t that important if we can conceieve naturally and that drugs from IVF might actually do more damage to than good to someone of my RPL history.

The fertility experts we’ve seen previously, back when getting knocked up wasn’t happening, thought they could work with my AMH as it was in January. But they also sided with the RPL clinic, thinking it probably isn’t suited to someone like me. My GP thinks they will be even less willing to work with my new number now. We’ll find out on the 22nd October when we have our next appointment with them. In the meantime we are considering going to a private IVF clinic so we don’t have to wait. There is still so much I don’t know or understand.

My new Chinese Medicine practitioner (love her) was completely dismissive of the AMH results. She tells me that the hormone, released by the antral follicles, is only as good as the follicles are in any given cycle. Given that I recently miscarried she believes the whole system is still recovering and the hormones are out of whack and if we test again in a few months things will likely improve. Even though western medicine suggests AMH can never improve she has seen it in her clients. She stressed what is important is the number of follicles, more than the hormone reading. I seem to have a decent number of follicles but no one knows whether they’re any good or not.

Right now we are waiting for further appointments with the various four professional groups. Feeling like we are swimming in opinions and information. Not knowing what’s real, what’s important, what to do next. It’s hard deciding who to believe. The RPL clinic? The fertility clinic? The reproductive immunologist? The Traditional Chinese Medicine practitioner? I have no freaking clue who to trust and I have a hard time hearing my gut at the moment. I don’t feel like I have the full picture.

This just feels like a cruel joke. It seems not only does my womb make a habit of losing babies but now the very essence of my ability to produce proper eggs at all is in doubt too. And to top it off, the beating heart of our last loss, the one who seemed to beat the RPL, AMH and age odds, stopped because of an independent fluke abnormality. F U universe, F U.

35 thoughts on “Can of worms

  1. This reads like a bunch of medical gibberish to me. If only you could throw all the doctors and specialists in a hat, shake it up, and pick one.

  2. I’m so sorry, friend. I can’t imagine how hard this must all be on you. Praying for you. Do not give up hope! I will pray you find clear direction and which way to go!

  3. Oh hun I’m so sorry, there are no words. I can’t imagine how you must be feeling at the moment. I hope that you are able to get some clarity and a coherent answer as to what the next steps should be. Thinking of you x

  4. I have an AMH of 0.16 or lower. I know it could be a blow when you get the news. I was crushed when I got my news. One encouraging thing is that, although I haven’t gotten my BFP yet, I think that it is totally possible. I belong to an online forum that many women get pregnant on their own with low AMH. My RE has had patients with my AMH who got pregnant with IVF. My acupuncturist also dismisses AMH results and has had patients who got pregnant naturally as well as through IVF with my kind of AMH results. Don’t let anyone discourage you from trying IVF. It’s very much possible to get pregnant. But again, I know it could be disheartening to learn the results.

  5. 😦 I totally understand not trusting your gut anymore… Everything you’re going through seems so confusing. How the heck do you even make sense of it? It’s terrible that you have to fight this awful battle. Thinking of you..

  6. I’m praying for you Lisette. I can’t imagine what you are feeling right now, and I struggle to understand the medical side of it as I haven’t begun the process of testing yet, but I’m praying that you’ll find peace in making the best decision for you, and that you’re miracle will come soon. I don’t know if that’s comforting at all to hear, but my heart grieves with you and I’m wishing you a much happier journey from here on out. HUGS!

  7. Poor thing, what a horrible position to be in. It’s such a ghastly journey, every time you think you know where you are something else gets thrown into the mix to stuff it all up again.

    Re. AMH, don’t despair. I have very low AMH too (or did 2 years ago, haven’t checked recently, assume it’s much worse by now!) and I have had 5 BFPs. The reasons I lost them are still a bit of a mystery but seems to be immunology related, not egg quality or quantity causing our problems. Masses of people get pregnant with your numbers.
    Also, DHEA was miraculous for me. I never got pregnant ever, and then 3 months after starting DHEA got pregnant naturally, twice!

    I would be inclined to go with the advice of your reproductive immunologist and your Chinese practitioner. Whoever is the most positive for your situation and actually is able to offer some solutions or courses of treatment.

    GOOD LUCK, wishing you all the best at this horrible time.

    • Thank you SO much for telling me this, It helps to keep me from drowning in statistics. Interesting, your take on DHEA. I’ve been reading loads about it lately and will be looking into taking it too. Really appreciate your take on this. Thank you xx

      • I started on a really high dose (300mg) for three months, then dropped it down to 100 mg for the following months. Continued to take it during IUI’s in a low dose (50mg) as it’s a cumulative drug and couldn’t find anything that suggested it would be detrimental.
        All the best in your decision making.

      • Brilliant, thanks for the advice. I’m going to look into it. And I’m inclined to trust the TCM doc and immunologists as you mentioned too. It just feels more holistic, more positive, more productive. All things I need right now. Thanks again xx

  8. AMH news is so difficult to comprehend and accept, I’m so sorry yours dropped like that! But you do have thousands and thousands of eggs left, is one way to look at it. I’d just be careful when it comes to DHEA—one suggestion is to get your current DHEA level tested, a really inexpensive and easy blood test—before you take supplements. Because too much DHEA in the system can be just as detrimental to fertility as too little. (I researched DHEA like crazy once upon a time.)

    • I agree with that. When My RE prescribed DHEA to me, I was being very careful and checked both of my DHEA level and my testosterone level to make sure that mine wasn’t high or borderline high. My RE just played along with me although she could tell from my history and appearance that my DHEA would not be high. Turned out they were both very low. One was even “not calculatable”. Whatever that means. So then I started to take DHEA. It’s been four plus months now. I can’t tell you if it’s helping me because I haven’t gotten pregnant yet. But at least it’s not hurting. We rechecked the levels again three months into it and it’s still within normal. I do get side effects from it though. I wrote about it here:

  9. I am so sorry to hear about all you have been going through recently. Numbers are not always encouraging, but your fight for a baby isn’t over yet. I think we often get overwhelmed with data and forget sometimes….sometimes…a miracle happens in spite of the odds. Maybe your miracle is in the works.

    Wishing you lots of luck and baby dust. 🙂

  10. I’m so sorry Lisette. I feel like whenever something awful happens for one of us, we all feel it. I just had a pit in my stomach reading this and wanted to be right there with you, dry heaving and destroying.

    But I agree with the other commenters – you still have plenty of eggs left and you have gotten pregnant, despite the odds. In fact, knowing that they can work with the other three issues once you get a BFP, well, that’s a huge relief! And since you’ve gotten BFP’s before, I’m really feeling very optimistic for you. Thinking of you!

    • Thank you hun, that is such an kind, thoughtful thing to say. I know what you mean though that when it happens to one, it happens to us all. I’m so appreciative to have you ladies on my side. Thanks for your support and your optimism. Really really appreciate that xx

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  12. Good grief! I guess I missed this post because we were traveling through the mountains and I had no internet connection. Sorry for the late response! I’ve had almost all of that testing done, the only thing I haven’t had is the Leukocyte antibodies test, the NK uterine biopsy (I only had blood), and Karyotyping.
    I bet your RPL is mostly attributed to your clotting disorder–I take it you’ve never been on prescription blood-thinners? And maybe the NK cells are an issue, but prednisone can fix that.
    It is terribly strange that your AMH plummeted so suddenly, and I wouldn’t put much stock in your last test–I feel confident you have all the eggs you need and you’ll just need to coax them to beef up their quality (that’s what all those damn injections are for, right?)
    So, I think you are fortunate to have this information and solutions to the issues you’ve discovered. You still have SO MUCH potential to make a baby!

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