Robyn’s story: RPL – what to do next?

The following was written by a friend of mine who is going through recurrent pregnancy loss. She’s looking for advice on potential next steps for determining why they keep enduring this pain and heartache.

ROBYN’S STORY

We first started trying in January 2015, and right away in March 2015 received a positive pregnancy test.  SUPER excited so we told our immediate family right away! So now we sat and waited for 12 weeks to come so the doctor would do more blood work and an ultrasound. At 10 weeks had some spotting so we immediately went to the doctor and he looked at our HCG numbers and they were low (1700) – sadly he said we would lose this one. We watched these numbers fade over the next week.   Two weeks of a natural miscarriage was the WORST thing I had to experience! A long emotional two weeks, feeling like I was the cause of everything, the let-down of family that we had told. I sat there feeling so helpless and questioned why us?

Growing up I always received the question, “what do you want to be when you grow up?”. I always answered “a mom” .  I wasn’t going to let the one miscarriage let me down! I had been advised by family and friends that it happens often a miscarriage. So, we decided to try again. That in itself is a challenge putting yourself out there again for it to happen again and the fear is unremarkable! Well we started trying and got pregnant again in September, 2015! I was hopeful that this was our baby ☺. Well once again at about 7 weeks I started having some bleeding again. Your heart breaks because you know exactly the outcome this will have! We spoke to our family doctor and decided to take Misoprostol which made it hard at first but it wasn’t the 2 weeks like before!  We also at this time decided to look at my thyroid numbers as mentioned from a friend and yes they were high (having normal all my life- I always checked as my mom and sister had issues I knew I was at risk too !)

Our family doctor decided to send us to an OBGYN. Within a few weeks we were in his office wondering why us and what can we do to change these outcomes? We brought it to the OBGYN attention that I had a positive ANA blood test. I have been diagnosed with Raynaud’s which causes issues with my circulation. He also did some blood clotting test on me and it came back clean. We did chromosomal on myself and my partner and they came back clean as well. So he started us on daily Asprin and sent us on our way. Once we received a positive we were to immediately start progesterone and do some blood work. Soo…now we face that fear of trying again.

Aspirin made me feel great! I suffered a lot of years of migraines and headaches- NOTHING with the aspirin maybe a few days that usually stemmed from me crying due to the emotions and fear of all this pain and unanswered questions.

We decided we were ready and hopeful that this aspirin made such a difference that it was maybe indeed the answer we were looking for! One simple pill made the world of a difference in how I felt. We decided to start trying and got a positive pregnancy test in February 2016 (I was on aspirin for 100 days now). I was terrified to see the double lines….3 pregnancy tests later ok…..this was real. So immediately that day we got the pregnancy blood work, started progesterone, and headed to the doctor that evening. Our HCG was 71- wow we caught this one early ☺ My thyroid was up to 8.3 so the next day we started 50 snythroid daily. I did the Antibody screen and it was negative. All my blood work seemed to be “normal” as he didn’t see any more concerns.

One week later, we did another HCG and we were up to 3241! That’s the highest we have EVER been fantastic! I felt great, I was so positive that we had an answer!  We did routine doctor visits every 2 weeks where he had a small hand held ultrasound machine. He couldn’t see much because it was so small, but there was something there! So he sent us for an ultrasound at 7 weeks 1 day – there was our little bean growing! A heart beat of 155- OHHH its sticking around! We got our first picture and headed out of that office with the BIGGEST smile on our faces. This was amazing the feeling of having a picture and a confirmed heart beat!  It does say on our report that I have a “mildly sub septate” uterus.  Our OBGYN didn’t seem to worry about this.

He redid my thyroid blood work and it was still slightly elevated at 4.4 so twice a week I had to take two doses of synthroid (which would be 100) on these days. I still felt great but always had a fear inside of me that something would happen. After 2 losses, I just had a hard time being positive and loosing that fear inside of me.

Routine appointment was on March 23rd which was about 10 weeks (10.43 to be exact) so I was down in my slump feeling worried and needs some reassurance that it was fine! So I go in and he does the routine how do you feel? Any bleeding or spotting? Blood pressure check and then the ultrasound with his hand held. He always said it wasn’t a fantastic machine to see small early pregnancies but he sat there and moved it and moved it and moved it……I began to worry. But he said “I’m sure its fine” and decided to send me for a ultrasound, one block away and 1 hour later I was in the ultrasound room….

The ultrasound tech did the ultrasound and left the room…I’ve been here before and knew it wasn’t good. Yup the worst has happened. We were told that it stopped growing shortly after the previous ultrasound. Immediately back to the doctor we go…..we had to stop aspirin and progesterone immediately and decide on our options. We waited the weekend and tried to spend it with family as it was Easter. I started having some bleeding and decided to do the Misoprostol. The first day two days I was instructed to collect any tissue or items that I passed to be sent away. I sent this away the next day, have yet to know of any outcomes. Our OBGYN suggested we try heparin shots next in a hope that it might work.

Here I sit…wondering what more answers can I find? What tests should I push for? I have heard of testing for APA blood work- symptoms I have that might work are arthritis feeling, ongoing headaches, upper body discomfort. Online it says you are at higher risk of miscarriage. Check the blood flow into my Uterus? NK cells ?  

SUMMARY

  • Raynaud’s Disease
  • Positive for ANA cells
  • 3 losses – March 2015, September 2015, February 2016
  • Elevated Thyroid levels once pregnancy confirmed
  • Last protocol under guidance of OB/GYN: Asprin, Progesterone, Synthroid (100 mg twice/week)

Any suggestions?

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15 thoughts on “Robyn’s story: RPL – what to do next?

  1. I am so deeply sorry, my heart is so sad with your friend. I don’t know if she’s considered this, but I would see an endocrinologist. I don’t remember the specific numbers, but something like a 3rd of miscarriages after 6 weeks are suspected to be the result of thyroid issues.

    Liked by 1 person

  2. I’m so sorry for all the struggles you have gone through and losses you have endured. I would look around and see if there is a Reproductive Endocrinologist in your area. A RE can do a lot more in depth testing and are able to pinpoint more exact issues that can cause problems with pregnancy. If you decide to continue on your journey to become parents, I wish you the best of luck with everything!

    Liked by 1 person

  3. First, i am so sorry that you have/are experiencing RPL. I understand this unique version of infertility all top well. If you ever need someone to talk to, feel free to reach out.
    Second, i definitely recommend an re and an ri. Between the two they will do a tonne of testing and hopefully find you an answer and a treatment plan. And i’d say my biggest piece of advice is to advocate for yourself in the medical system. Push for more testing and don’t accept the answer of “just keep trying eventually it will work.”
    Sending so much love and hope your way!

    Liked by 3 people

  4. Heartbreaking. I am in a group with women who have had many miscarriages – one had 7, one had 9 – most of which are now pregnant or have a child.

    Has the writer had the usual recurrent miscarriage panel? I assume so.

    My suggestion for next steps: wait for the results of the chromosome test. If the fetus has a chromosome issue, then a logical next step is IVF with PGS testing. This testing is not cheap but it can rule out abnormal embryos, reducing the chance of more miscarriages.

    However, if the fetus is normal, then it increases the likihood that the issue is with the uterus, or your immune system, thyroid, etc. Then it’s a process of elimination. See a uterus specialist and have the septate shape looked at, ensure theres no hidden endo or pathology. See a reproductive endocrinologist and have the thyroid issues assessed.

    The final step perhaps is to see a reproduction immunologist about natural killer cells and other immune dysfunctions. This involves testing both you and hubby’s sperm to see if there are mismatches, etc. This is a somewhat controversial area of medicine with not all fertility specialists agreeing that its a legitimate way forward, but ladies in my group got their child after going though treatment provided by Australian doctors who practice in this area.

    Another option is to try donor eggs or sperm (usually it’s eggs). This can sometimes remove the issue. However, it’s generally a last step for people.

    Good luck to your friend. A good fertility specialist is a must – rather than an OBGYN.

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  5. Oh my heart breaks for you, I’m so sorry. Like others, I highly recommend seeking out the specialists. But because you have some although not complex on the surface issues, I do highly recommend that you seek out an RE that is open to immunological explanations and modern procedures to deal with them. Ivig and different immune therapies aren’t bought into by all RE’s. Go with one that does. Maybe they aren’t into all of them but in this day and age, the specialists should be open to some.
    Also, I read “is your body baby friendly” and it changed a lot for me. Specially the questions I asked and ultimately it had me change clinics because I couldn’t accept their diagnosis. And join IVF.ca if you haven’t already. You don’t have to be active on there but a lot of those women have gone through so much and there’s a wealth of information.
    Whatever you decide to do, where ever you decide to go, just go with the path of least regret. Good good luck 💜

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  6. I have a very different diagnosis, but I do have to take blood thinners in addition to baby aspirin to support my pregnancies. For some people, they don’t know why (even if they don’t have clotting issues), it just makes a difference. I work with a hematologist and an RE when I’m actively TTC.

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  7. Hi Robyn via Lynsey,
    I was so sorry to read your post. I too went through the trauma of RPL with four losses over five years, most of which occurred in a very similar way to yours – missed miscarriages picked up on scans after previous detection of heartbeats. After four years and three losses, I decided to go down the donor egg route after our first round of IVF yielded a very poor response but after our second donor egg round ended in early miscarriage we knew we had to do more. I had the full immune work up and nothing came back but, regardless, for our third donor egg we did the lot: progesterone shots, clexane (heparin – same as aspirin, in that it’s a thinner) and intralipids. I also had a uterine scratch. This round was successful. There’s something in the fact that RPL is a numbers game, but when we go again, there’s no way I’d do it without that lot.

    I know how glib it can sound saying ‘we tried this and it worked’ because what worked for me may not work for you so just in terms of information I would strongly recommend having a look into Professor Quenby’s work on RPL. She’s based here in the UK and her research is ground breaking/world changing. A friend of mine has been part of one of her studies and it has been a hugely positive experience.

    Regardless, I am so sorry you’re going through this. It’s truly heartbreaking, terrifying and exhausting. I sincerely wish you success and the strength and love to carry you through. You are not alone!

    With huge love and warm thoughts,
    Lucy
    XX

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  8. First off, I’m liking this in solidarity with and out of compassion for your friend Robyn and for your kindness in doing this. Second, I’m deeply sorry for what she’s been through. Third and most importantly for her Raynaud’s and the crazy spikes in TSH suggest possible Hashimoto’s Thyroiditis but oddly her antibodies came back negative. With all that and the +ANA she needs more than baby ASA to address her immune issues and Intuitively I’m confident these aren’t her only immune issues. A proper blood thinner would help but I would bet big money she needs more than that to prevent another loss or losses. Can she afford proper testing in the US? Email me if you want to talk more about this or feel free to give her my email (and first name).

    Btw a RE isn’t going to do the testing Robyn needs. Just my opinion. They did *nothing* to help me except take my money and tell me DE would fix everything. Which was a lie.

    Liked by 3 people

  9. So sorry Robyn! Being that I have autoimmune issues too, I’d like to offer my support through sharing my experience with RPL/Infertility. I have Ulverative Colitis, Hypothyroid, and Lichen Sclerosus–I’ve also had elevated ANA’s.

    I’ve never heard of someone taking Synthroid every other day, especially since your TSH was quite high to begin with. TSH should stay at or below 2.5 in order to safely conceive and carry a pregnancy–a Reproductive Endocrinologist (RE) should/would know this, so I suggest you see one.

    Due to your autoimmune issues and the fact that you’ve had 3 losses (again, so sorry) you should have a complete RPL/Autoimmune panel of bloodwork completed. An RE can order these tests and explain the results to you and give you a treatment plan.

    FWIW, I ended up using Heparin (a blood thinner) throughout my (long awaited and hard won) pregnancy. I didn’t test positive for any clotting disorders, but autoimmune issues and antibodies like ANA’s encourage clotting, and aspirin might not be enough. So to be cautious, my doctor had me use blood thinners and I’m glad he did, even though tests said I didn’t need them. If you want to know more, read my blog–my background is in the “about” section and in my menu under my IUI protocols. Or Awaiting Autumn has my email! Good luck Robyn. XOXO

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  10. I’m sorry for Robyn, we went through something similar. For us the solution was IVF with PGS. People don’t realize that IVF is actually highly diagnostic – I would not have known that so few of our embryos are normal until we went through the process. Our first RE also did mention that when she sees somebody having RPL who gets pregnant so easily (and as heartbreaking as Robyn’s story is, she actually gets pregnant super easily) she suspects poor egg quality/abnormal embryos are likely playing a significant role. That in most women like that, the body would reject implantation but in some, the embryos keep implanting and then being rejected later on.

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  11. I’m so sorry, Robyn, that you have had to endure so much heartbreak. I second and third what many others have already said: the best advice I could give would be to seek out the advice of a reproductive immunologist. I am more than happy to talk about my experience with my RI (a very positive one)–feel free to email me at theskyandbackblog@gmail.com if you want to talk.

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  12. Dear Robyn, I am so so sorry for your losses. I’ve had 3 as well and there is nothing so horrible as to hear that your baby has no heartbeat. I am going to echo a lot of what has been said above. Firstly, please please go see a reproductive endocrinologist. They will do much more in depth testing and probably have some better recommendations than your OB will have. An OB is not an expert on RPL (mine told me there was nothing wrong after the third miscarriage and fought me in my request for a referral to an RE). I would suggest getting the report of a “sub-septate” uterus checked out and an RE can do specialized ultrasounds and x-rays to evaluate this further. They can also test egg quality, which ended up being my issue (most likely, as I also have a rare uterus anomaly). Secondly, please also see a reproductive immunologist (or you can find a RE who is willing to test/treat immune issues). From my research, losses after seeing a heartbeat can be related to an immunological issue. Thirdly, I have found great information on the RESOLVE.org website and the infertility forums on the inspire.com website (specifically the infertility section). You can post specific questions or you can search old posts.

    Please know you are not alone in this battle. There are (unfortunately) lots of us that suffer from RPL and I am so sorry you have to go through this as well. Good luck!

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  13. I’m terribly sorry for what you’ve been through. This kind of heartache can be unbearable. One option is to seek help from a perinatal specialist who deals with high risk pregnancies. Have them review your medical history and RPL history. They may have suggestions for other tests and what steps to take next and can be someone you start seeing right away when pregnant again. Best of luck to you.

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  14. I’m so sorry Robyn. Your miscarriages sound similar to my first three. I had a 4th, but that was proven chromosomal under an RE’s care. I echo everyone that said seeing an RE is best. The job of an OB is only to help you when you are pregnant, their knowledge is very limited when it comes to getting someone pregnant or in your case, keeping you pregnant. The synthroid dose is very strange to me and I think you’re thyroid needs to be handled more aggressively. Are they checking your TSH, FreeT3, & FreeT4? Have you had RPL blood work panel done? You could also request an HSG and a sono. Your miscarriages could be caused by structure and if you haven’t had these, it cannot be fully diagnosed. I just want to tell you how sorry I anyway you’re going through this. RPL was so devastating for me and I’m here if you want to talk. The email I check regularly is reclaimedgardening@gmail.com

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