Recurrent Miscarriage Thread

[Tasha]

Hope I'm so sorry, you've made friends with her for a while now. Plus it must bring back so many emotions and it's already scary for you.

Laughingduck I had pre-eclampsia in all my pregnancies that made it out of first tri except for my latest one. I was told that pre-eclampsia was linked to elevated natural killer cells.

 

[pinkpassion]

Wow hope, you've been through it.. as many ladies on this thread have!! I take comfort in all the support here!!! I'm so sorry we are all here though!!!

 

[dairymomma]

I never thought I'd be so happy to be getting tested for something but my doctor put in the order for MTHFR testing. I stumbled across a more thorough symptom list than I've seen before (I've never really looked into it and pretty much only knew it could cause clotting issues and you needed a special form of folate) and whattaya know? I have nearly EVERY symptom on there and they are all the things my dr and my naturopath are both stumped over because those symptoms are so chronic in me! It makes perfect sense and if I'm lucky, it'll be easily treated. (If I'm unlucky, the treatment isn't that bad either. Just means stronger blood thinners.) If this comes back positive, I'm going to be bummed that I have it but I'll be so happy because it'll be (hopefully) THE answer I've been looking for. And I'm just glad my dr is testing me because he says current theory says MTHFR has no bearing on miscarriage but he'll test me if I want it. Gotta love the supportive drs who will let you do what you want, right?

 

[laughingduck]

Laughingduck, my dr said I had to wait also, because hcg can cause false positives and falsely elevated numbers ... it has been absolute hell waiting but finally this Friday I start all my testing!!! It's been 6 weeks now.. I should have been 16 weeks already.. it makes me sad!!!

I know what you mean. My first I was due in January, then a couple weeks ago my cousin announces she is pregnant and due in January. I was so happy for her but sad for myself. When I found out I was still pregnant and due in April this time though, so thought oh well, I have my rainbow now! I really felt good about his one, I "knew" it was going to stick around. Then I lost that one too. Today is my dad's 70th bday and I was so excited to tell him he was going to be a grandpa again, but now I cant . Anyway, little pity party for myself, I hope to get my sticky rainbow soon.

Waiting is the worst. I was under doctor's orders to wait at least 3 cycles this time because I not only m/c back to back and he suspected hyperfertility was the cause (in essence I caught eggs that normally shouldn't/wouldn't have fertilized), but my last m/c was twins and the loss was different than my others physically. He wanted to make sure my uterus and hormones were back to normal before we tried again. I decided to take advantage of this waiting time and focussed on myself for a bit in an effort to not only get healthier but also keep my mind off of the waiting and help pass the time. I started an intense workout program called P90X and I'm loving it. Having something to keep me occupied has helped immensely. I'm still not able to ttc quite yet (need to meet with my dr and possibly have a bit more testing/retesting done) but as hard as it is to wait, it's also nice having this break too.

That's a great attitude! I restarted my workout regime today. I had a glass of wine last night (I hardly ever drink but figured I may as well while I can lol). My daughter is at school in a couple weeks and I'll have some extra time to get uber healthy. I want to start meditating too, stress can be a major factor in miscarriage and I know I need better ways of coping with stress. Anyway, it will happen when it happens and in the meantime may as well make the best of it right?

 

[laughingduck]

How exciting Hope! Is this your first? Care to share your story with this newbie? Im assuming you had some losses if you are postimg in this thread. I always love hearing people's success stories!

I had 6 first TRI missed mc, then a placental abruption at 27w and lost isaac 3 days later in nicu and this pregnancy is no8, my first take home baby hopefully

I was diagnosed with thyroid antibodies and hypothyroidism after my 3rd mc, after my 6th mc I was diagnosed with a septate uterus , elevated Nk cells and ureaplasma . I had septum surgery, treated the ureaplasma with antibiotics and took steroids for the NK cells for isaac pregnancy . This pregnancy we added in hydroxycloroquine (malaria drug) x

My goodness sounds like you have quite a lot going on that you had to work through to get to where you are. Super big congrats, it wont be long now until you meet your baby, how exciting!

 

[laughingduck]

I never thought I'd be so happy to be getting tested for something but my doctor put in the order for MTHFR testing. I stumbled across a more thorough symptom list than I've seen before (I've never really looked into it and pretty much only knew it could cause clotting issues and you needed a special form of folate) and whattaya know? I have nearly EVERY symptom on there and they are all the things my dr and my naturopath are both stumped over because those symptoms are so chronic in me! It makes perfect sense and if I'm lucky, it'll be easily treated. (If I'm unlucky, the treatment isn't that bad either. Just means stronger blood thinners.) If this comes back positive, I'm going to be bummed that I have it but I'll be so happy because it'll be (hopefully) THE answer I've been looking for. And I'm just glad my dr is testing me because he says current theory says MTHFR has no bearing on miscarriage but he'll test me if I want it. Gotta love the supportive drs who will let you do what you want, right?

That's great! I did the 23 and me testing a few years back and have one copy (heterozygous) for c677t. I mentioned it to my doc and she didnt know what it meant so has referred me to a geneticist. That was a couple minths ago though and still no word about an appointment. She tested my homocysteine levels which were normal though.

Tasha did you take anything special for your pregnancies taht made it out of first trimester? Do you have kids? I didnt know that about the natural killer cells, but know pre-e was related to aps, and both those are autoimmune related, so it makes sense. Has anyone heard of LDN (low dose naltrexone)? Some fertility clinics use is for unexplained recurrent miscarriage. I am on it for ulcerative colitis. It helps modulate the immune system (obviously not enough to prevent my own miscarriages, but I have an extrememly bad immune system, chronic problems for years).

I just noticed that nobody's signatures work in this thread. At first I just thought it was because nobody had one, but I noticed mine does not show up either, and I have one. Makes it hard to know people's backgrounds! Can anyone else see signatures?

 

[pinkpassion]

No sigis on this thread ... I assumed so that it is respective of others.. but I agree it makes it a bit hard to get to know people and /or follow them on their journals or whatever!

 

[ginny83]

Hope - that is so sad and I bet it's shaken you up too. Hang in there, so close now xx

Regarding PE and APS.... I don't have APS, I have been tested for it several times. With my first pregnancy, which resulted in my eldest son, I developed pregnancy induced hypertension and was induced at 39 weeks - no other PE signs. He was on the small side 6lb6oz. BP went back to normal after that. Then all the miscarriages started happening and I got diagnosed as having essential hypertension - which runs in my family, although still quite young to be on BP meds. For people with essential hypertension they have a higher risk of developing PE - so with my rainbow I was monitored extra carefully because of the miscarriages and my BP. I also would have been on aspirin even if I didn't have any miscarriages because they think aspirin helps prevent PE with people who have a higher risk of developing it. BP was perfectly controlled until 34 weeks - had a couple of overnight stays but still no other PE signs. Was induced at 38 weeks and then very unluckily I ended up getting post partum PE. Technically I think it's actually called superimposed PE in my case as I have high BP anyway - so trickier to diagnose, but I ended up having high protein in my wee and sky high BP.

I'm sure it's all somewhat interconnected. However, I had miscarried while I know my BP was perfectly controlled and also even on things like clexane and apsirin. For me I needed a combination of clexane, aspirin, steroids and intralipids.

 

[Squig34]

Dairy, could you please post the link that you found so useful re MTHFR?

Duck, Pink - that's right about the sigs, it's so ladies in this thread don't have to deal with seeing BFPs & tickers all over the place which I think is the right thing to do, although admittedly as a result I didn't realise for 6 or 8 months that people had journals etc...

 

[Tasha]

I spoiler my history laughing duck as it is long and involves positive pregnancies

Spoiler

Pregnancy one (2004) - smooth pregnancy no medications but induction at 36 weeks due to pre-eclampsia

Pregnancy two (2005) - beta blockers from 24 weeks and induction at 37 weeks due to pre-eclampsia

Pregnancy three (2007) - premature rupture of membranes at 28+6, failed induction at 29+1, stillborn at 36+6. Postmortem says placenta 50% too small, 60% clots and a 10% abruption. It states that lack of waters for eight week compromised the placenta. Also IUGR. Full bloods done, nothing found.

Pregnancy four (2008) - early in this pregnancy it's discovered I have factor v Leiden so placed on clexane (40mg a day) and aspirin (75mg). I get pre-eclampsia again but my rainbow was born after an induction that turned to emergency section.

Pregnancy five to eleven (2008 to 2010) - all first trimester loses

Pregnancy twelve (2011) - on clexane (40mg), aspirin (75mg) and progesterone (400mg). Taken off all medication at 16 weeks despite my pleas. By my 20 week scan she was tiny. She was stillborn at 24+3. Postmortem found placenta was tiny, 70% clots and a 10% abruption.

Pregnancy thirteen to twenty-one (2011 to 2014) - all first trimester loses.

During that period I became more and more desperate, I saw Dr raj rai at St Mary's Paddington and paid for karotyping on both myself and my husband, a full blood screen on me and a TEG. Karotyping was fine, blood screen showed MTHFR and TEG showed extremely sticky blood).

Then a while later I saw professor brosens and professor quenby at Coventry where I had a uterine biopsy. Elevated natural killer cells were confirmed.

Eventually I saw Dr shehata at Epsom. Bloods confirmed elevated natural killer cells.

A year after that in November 2014 I went back to Coventry as they had a new care plan for me.

Pregnancy twenty-two (2015) - when I went in November 2014 I was already pregnancy but they did an early scan (five weeks) and told me it was non-viable but gave me the plan for next time. A few days later I tested and got 3+ so carried on my medications. They decided to try everything as I had decided this was my last shot! So we had vitamin d, iron, multi vit, high dose folate (5mg), prednisone (25mg until 12 weeks then wean off), anti malaria tablets, aspirin (150mg), progesterone (400mg twice a day) and clexane (80mg twice a day).

Then on the 17th June 2015 at 36+3 my rainbow was born

I agree about the signatures needing to be turned off. For some it's just too painful.

 

[dairymomma]

Squig- sure. Here's the one that first started me looking at 23andme testing and here's the one that sent alarm bells ringing in my head. I have chronic hormone imbalances (specifically high estrogen) and chronic thyroid stuff that my naturopath can't figure out and the second site links those issues to MTHFR. We also know I feel best when I'm on a B vitamin supplement which makes sense if it is MTHFR too. My medical dr fully supports my choice to see this naturopath because he has admitted he has little else he can do for me and he's curious to see what the naturopath finds.

And a quick update-I can get the blood test done whenever I want so I'll likely be heading in this afternoon to get jabbed and the dr will call with my results. I was going to do the test through 23andme but decided against it in the end because of the family history of bleeding issues. I figured it would be better to have it in my medical file just in case. My uncle has to have a defibulator implanted soon, my aunt needs heart valve repair/replacement, and my youngest brother is inching closer to needing a double lung transplant so all three are getting the 'kitchen sink included' set of clotting tests before any of their surgeries but if I show up with MTHFR, it'll be one the drs KNOW to look for in them.

On the signatures, I actually didn't know there was such a thing until I started looking into other forums because when I first joined BnB, I only hung out on this thread. It was months before I ventured out into the rest of the site and then it was like 'whoa, what are those things?' I agree though. It's more respectful for those of us here to not see bfp and baby news all over. And if you are interested, my journal is here. I keep it as a pg journal even though it's been more of a 'ttc/vent about my AF being messed up' journal of late because up until now, I've spent more time being pregnant than not. Feel free to check it out though.

 

[Squig34]

Tasha, where did you get the MTHFR test done? Was it private or NHS? Just considering, as Dairy mentions, how to do it to ensure the results can go on my medical file.

 

[Tasha]

I had it done at St Mary's Paddington, privately but it can be done on the NHS I had had enough of waiting by that stage though xx

 

[Squig34]

Thanks. I can't understand why they haven't tested me for it when it can be done on the NHS & my other results are coming back clear! Although the consultant I saw recently did do some blood tests, just not sure which ones. Maybe I should wait to find out if MTHFR was one of them before I go & do it privately!

 

[Hope39]

Squig - not everyone has it tested on the nhs, my local hospital didn't . They gave me a telephone number for the homocysteine lab on York to get it done myself, it cost £99 back in 2010. I didnt have it done though

I'm not sure if Mr Shehata may have then tested me for it in 2013

Xx

 

[Squig34]

Ok thanks Hope - I don't mind if I have to pay for it, but it's been completely ignored as an option for me & if the NHS does it some places, I find it odd that it's never been mentioned, even if not carried out - I didn't think it was taken under anyone's notice in the UK until Tasha's post! I'm going to see if I can get it done locally, & if not, then I'll try 23andme.

 

[Tasha]

So frustrating that there is no way uniform blood screening isn't it?

Shehata does test for it Hope.

 

[Hope39]

I prob had it then when he did full thrombo screen x

 

[pinkpassion]

That was one thing my dr didn't check for because she said there is no real evidence that mthfr can cause miscarriages and most people get enough folic acid anyway ... bummer , but if all my other tests come back fine I may just ask for that anyway!!!

 

[hopeful23456]

I've taken 23andme test, last nov, friend of mine sells it n he is a geneticist. I had mthfr test 5 yrs ago along with all the other rpl tests. I like 23andme as it tells a lot of stuff about your genes in general