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Miscarriage/pregnancy loss

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Recurring miscarriages - 5 in a row. Is there hope?

16 replies

magicbeanz · 21/11/2017 12:23

Hello everyone,

I'm new to this forum and was hoping for some reassurance or advice on a day when I'm feeling very sad! My (long - sorry!) story starts back in October last year when I found out I was pregnant. I was over the moon albeit very nervous. I had no symptoms really, except sore boobs and then my hair feel out for about a week which made me worry, but everyone said it would be fine, I wasn't bleeding, so I carried on. I got to my 12 week scan and was devastated to find out I'd had a missed miscarriage. A week later I had a D&C and 2 weeks after that, the bleeding stopped and things went back to normal.

The following month, on what would have been the first day of my period, I tested positive again. I'd heard lots of stories of women getting pregnant straightaway after miscarriage and thought I was one of the lucky ones. But I took another test about 5 days later and it was negative. My period followed 5 days after that. Then nothing for a few months.

In June, I had the same thing happen - positive test for about a week, and then negative followed by a bleed. In July, it got to around the 6 week mark and then failed. I then went to see a specialist who did all my bloods/AMH etc. My TSH, LH, FSH, AMH etc. were all fine but he found that I carry two copies of a MTHFR mutation and also that I am a carrier of Leiden V. I was prescribed 5mg of folic acid to be taken straight away, heparin to be injected from the day I fell pregnant, and progesterone pessaries too.

I fell pregnant again in September and started everything straight away. But a week later, the bleed came. I thought I perhaps hadn't given the folic enough time. So when I found out two weeks ago I was pregnant again, I had everything crossed. But was incredibly nervous. Went to my GP for blood tests - all was fine on the first one, but the second showed my levels are dropping. So this one is going to fail too. I'm still testing positive and no bleed yet.

I'm going back to see my consultant tomorrow and we'll explore chromosome testing and maybe IVF. But I'm now feeling completely terrified that I'm never going to be able to move a pregnancy forward. I wondered if anyone else had had a similar experience and if you had any advice or positive stories for me to hang on to! If so, I'd love to hear them.

OP posts:
ferntwist · 25/11/2017 06:57

So sorry for your losses. I recommend the Recurrent Miscarriage team at Coventry, where you can be referred on the NHS from anywhere in the country. They will test your womb for NK cells and they prescribe a protocol of prednisolone, progesterone and heparin.

jessie18 · 25/11/2017 07:19

Yes please have hope! I've been where you are now it's devastating. I've had 6 recurrent early losses every 2-3 months, had every test going so learnt a lot along the way! After months and months of being told " at least you're getting pregnant" arrgh and "just keep trying I'm sure one will work" I finally discovered my issues were probably tubal. I looked into IVF was given 14% chance of success as I'm 42. After just one mild IVF cycle - so just one egg- I am 16.5 weeks pregnant with a little girl, yes pinch me I'm having to pinch myself every day! Of course it sounds like you need specialist care but I wanted to share my story. One phrase always stuck with me. When the world shouts "Give up!", Hope always whispers "Just one more try"
I'm sending you hope and if you ever need anyone to talk to especially in those darkest moments please reach out xx I've kept all my positive pregnancy tests and dates in a little diary

ferntwist · 25/11/2017 07:49

Hi Jessie thank you for sharing your wonderful story of hope and congrats on your little girl!
Could I ask what that means, that your losses were tubal? Did you follow any medication protocol on your successful pregnancy?

jessie18 · 25/11/2017 11:11

I am on clexane injections and was in progesterone pessaries which I've stopped now. Basically I had tubal surgery - a tubal reversal- and both tubes were determined to be clear but eventually were blocked after 4 early losses I was then told one tube was irreparable I went in to have 2 more early losses before trying IVF. This was after a lot of tests but yes I agree with another post- I saw a professor at Coventry whose father was the first tubal surgeon and although he tested me for NK cells his verdict was I needed to try IVF asap as he thought my tubes weren't working - he was excellent and he was right.

magicbeanz · 25/11/2017 16:20

Hi ferntwist and Jessie, thank you for coming back to me. And yes, congratulations on your little girl Jessie! That’s wonderful news and I’m very happy to hear that someone with a similar experience has found a way through. That’s amazing. And thank you for both sets of advice. I’ve heard lots about NK cells but my current specialist is in the non-believer camp so he won’t go down that route of investigation. But I’ve heard about the Coventry clinic so I will look into that. I’ve got a big fat supply of clexane and progesterone ready to go should there be a next time. Now I have to take progesterone a couple of days after ovulation. So let’s see if that makes a difference. Still no bleeding and still testing positive so I just need my levels to drop off and then I can get back into my cycle and back in the saddle so to speak. The ‘just one more try’ is a great mantra to live by. I’m going to keep saying that until I (hopefully) get there. Appreciate both your support.

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ferntwist · 25/11/2017 17:19

Thank you Jessie and wishing you all the best for a wonderful pregnancy.

Magic, one more try is a great philosophy. I hope you get to see Coventry if you need to as they're doing lots of research and have so much experience of women like us. Good luck!

jessie18 · 25/11/2017 19:20

Thank you 😘 lots of best wishes,hugs and hope to you - I have read stories all over forums about ladies being treated for NK I even tried predisolone myself on one pregnancy but of course that wasn't my issue

Seasidetown · 25/11/2017 22:54

I suffer from recurrent miscarriage. After 7 consecutive MC with no living children I am now 21 weeks pregnant! Good luck Flowers

ferntwist · 26/11/2017 09:15

Hi Seaside so sorry to hear about your losses. Congratulations on your current pregnancy! Have you done anything differently this time or taken any medication?

magicbeanz · 26/11/2017 22:19

Hello Seaside, congratulations! That’s great to hear. And thank you ferntwist, sending you lots of luck too and hope you get there soon.

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flumpybear · 26/11/2017 22:27

Good luck!! I had multiple interventions such as high folic acid, aspirin, hcg injections

That worked for second child - first child I used Angus castus til pregnant then high concentration folic acid with 75mg aspirin

Two kiddies now after many miscarriages exactly as you describe

letshope · 13/09/2022 22:42

hey I know this is an old post but your story is so similar to my own. I also have mthfr homozygous. And had 3 misscariges.
I wanted to see how you got on when trying again and any advice you could give me would be appreciated.

magicbeanz · 14/09/2022 08:38

Hi letshope. I’m very glad to report that we made it not long after this post and now have a healthy and very boisterous 3.5 year old boy. I thought perhaps my body had ‘righted’ itself during that pregnancy but unfortunately, I went through another 8 miscarriages after he was born. Most at the 6 week mark, and 3 a bit later which all needed D&C’s. But where there is hope… I am currently 25 weeks pregnant and all is looking good for this one so far.

So my main message is, it is an arduous journey but if you can dig deep, please keep going. I know that’s not for everyone and this time round we were literally 2 cycles off from hanging up our boots and counting our blessings - it all takes such a mental toll on you, your partner and the two of you as a couple. Huge pressure. But if you can get through this, you can get through most things.

As for treatment etc, I took the following. Caveat here - I still experienced miscarriage despite these meds so who knows if they make a huge difference but it felt like I was doing something!

5mg folic acid - my doc prescribed me this to deal with my MTHFR mutation

Garden of Life Vitamin Raw prenatal - these contain folate which is easier for the body to absorb than folic acid, esp if you have MTHFR issues.

Pharma Nord Bio-quinone Q10 gold - Q10 meant to be very good for egg health.

50mg levothyroxine - at one point second time round I wasn’t getting pregnant and whilst my thyroid levels were normal by NHS standards, they want it between 1 and 2.5 for fertility.

400mg progesterone pessaries - I took these twice a day from 4 days post ovulation, stopped if negative, and keep going til 16 weeks if positive. Lots of research about the benefits

Clexane - I injected myself every day from point of positive pregnancy test until 20 weeks. But I had Factor V Leiden issues so this isn’t for everyone.

Baby aspirin - from point of positive pregnancy test to 36 weeks but again not necessarily for everyone.

We also had my husband’s sperm more thoroughly tested and turned out he had high fragmentation. So he took Proxeed every day to give him a boost. Really important to have them checked - so much of the focus is on us when in fact, many problems are down to them!

Finally, under the care of the Lister, they did the natural killer cell test on me which found I had elevated levels. Some people don’t believe in this at all, others swear by it. I thought, what the hell! So once we knew my hcg was doubling at the start of this pregnancy, I had two drips four weeks apart to basically suppress my immune system, the thinking being my body wouldn’t attack the foetus. Who knows if it did the trick but here we are. We didn’t do this first time round I might add.

It’s really frustrating because we know so little about miscarriage, we try all these things and never really know what made the difference. But food for thought anyway.

Does that help you? Very happy to answer any qu’s if you have them. And wishing you the very best of luck. I hope my story has given you some hope. X

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CaptainBarbosa · 14/09/2022 08:46

I have a bit of positive news for you!

I had 3 miscarriages in a row, and was sent for chromosome testing as people were scratching their heads as to why what would be a perfectly healthy 20 something woman was experiencing such losses. I was perfect healthy weight in the prime of my fertility, we had non-issue getting pregnant I could get pregnant once every 8 weeks 😳

It came back I had a chromosomal balanced translocation. We were told we could do IVF with GDP but it would be about a year waiting, ok we said. The consultant said, if you feel up to it though you can just keep trying as a "good egg" might catch. So we thought ok we will just keep having sex unprotected and see how it goes.

I had 4 further miscarriages, one month after another but then...."we caught a good egg" and DS was born 😊

So in total I'm 7 miscarriages and one perfectly healthy live birth.

Don't give up yet OP!

letshope · 17/09/2022 00:35

Thank you all for your replies means a lot. Fingers crossed this time next year I will be in a different position xxxxx

magicbeanz · 17/09/2022 07:42

Yes I really hope so. I am keeping everything crossed that your happy ending comes very soon. Be kind to yourself and keep looking forward. Wishing you all the very, very best. xxxx

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