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Original poster

TTC after pregnancy loss - thread 27 - BFPs are coming!

987 replies

Yukka · 28/11/2018 19:31

New Thread as we're at 988 messages on thread 26. we'll do a quick roll call:
Age 39
TTC x1
MC x 3 = Sept + Dec 2017 + May 2018
Currently pregnant again 5w4ds
Diagnosed with APS/Hughes Syndrome. On Asprin since October and start Heparin tomorrow. First scan Monday.

xx

OP posts:
Thread gallery
36
Laney79 · 05/01/2019 07:57

@Chilliandlime sadly not. I've pushed and to be fair you wouldn't normally get nhs tests for lupus/anticardiolipin until you've had three MC's so my consultant has been helpful in that sense. But what I really want is a referral to prof Quenby at Tommy's in Coventry - but my consultant says not until I've had a third loss. I'm 40 in July and have no kids so I feel I'm really up against it time wise, and worse still I know the prof would accept me if I was referred as I asked her secretary. But I'm stuck. My consultant obv thinks it's age/old eggs and that I've got a decent chance of success next time-but I feel like I've been told to go away get pregnant and miscarry again before I'll get help that I know is out there. He has said to take baby aspirin from BFP so I just have to hope that if we do catch that will help.

I'm toying with another medichecks test-the female hormone one, just so I can get an idea of where my hormones/egg reserves are at. Just worried the results will be dodgy if I do it now as my cycles are so all over the place, but it's on offer at £59 and it's another finger prick one...I can see I'm going to get addicted to doing these tests, at least it feels as if I'm doing something.

Lilimum5 · 04/01/2019 22:57

@Laney79 sending you huge hugs hun x
@KnitKitty lovely to hear from you. God to hear that you might be getting some answers x

Welcome to the 🐧 huddle to the new ladies and sorry for your losses. As @Laney79 said this tread is a life saver, I wouldn't have gotten through all this with out the support of the ladies I've met here.

KnitKitty · 04/01/2019 22:22

Hi ladies,

Just dropping by to say hello again. I have been reading your posts every so often. I'm so sorry to see so many of you are having a tough time at the moment.

Massive penguin huddle cuddles. Stay strong ladies.

@Yukka I'm really pleased for you and heartened to know that your pregnancy is going well so far. It really gives me a spark of hope.

As for me; I got a letter just before New Year saying one of my blood test results came back as "significantly elevated" for prolactin. I've had to redo the blood test and have another MRI; this time on my pituitary gland. I had the MRI today. I don't know if I'll get results for that by post or if I have to wait for my next appointment at RMC... But I don't have that appointment through yet.
On the plus side, I'm starting a new job a week on Monday and really, truly enjoying having a break from TTC. I really feel like I've done a lot of healing and managed to enjoy Christmas and New Year, which I don't think I would have if I was still TTC.
I had my acupuncture appointment today. My period hasn't really wanted to get going properly this month; I had spotting and then very light flow brown bleeding for a couple of days and then felt like it'd dried up completely again. The practitioner said she'd try to set it off... lo and behold, AF arrived a few short hours after my appointment. So CD1 of another cycle sans TTC right now.

Chilliandlime · 04/01/2019 22:05

Just seen this article from today, perhaps this will start to become part of routine tests?:
www.google.com/amp/s/amp.theguardian.com/lifeandstyle/2019/jan/04/more-male-tests-needed-in-cases-of-repeated-miscarriages-uk-study
@Laney79 thank you for letting me know about the timing of your tests, that's good to know. I had a stop-start first af after first mc with brown then back to red a few days later. So sorry to hear Christmas has been tough, not what you need right now. Have you been offered any further tests?

Original poster
Yukka · 04/01/2019 20:38

@lilimum5 levels are difficult as its not the same for everyone, but at 4 weeks I believe should be 25-150 then doubling every 48 hours from there. So if you were 5 weeks and levels are more like 4 then it could be bad news. BUT the drs don’t use the actual level as a measure because it varies so widely, hence they simply track whether its increasing or decreasing. Decreasing would sadly suggest the pregnancy has failed and the body has recognised this, but again I’m sure it’s not the case for everyone.

Good luck for the scans on Sunday for you and @sjr76 xx

OP posts:
Laney79 · 04/01/2019 20:38

Crikey, sounds like we're all having a really rough time at the mo for different reasons.

@InDreamland I'm so sorry AF turned up. Big hugs.

@Lilimum5 and @SJR86 what you are both going through sounds awful. It's just so cruel.

@Ithinkthatsenough sorry for your losses, this board is a lifesaver. Welcome to the huddle.

@Chilliandlime they did my tests before my negative test too-I've only had the two I mentioned but both came back as negative for clotting. Thanks @Yukka for the info-I'm wondering if I should ask for the third test now?

Well my body is determined to screw me over it seems. Was on a 26 day cycle before losing Bow, my second in September. Took 53 days to get my first period, and last cycle was 35 days. AF started last Friday, and I thought she was outta here yesterday bar a teeny bit of brown on wiping. Now this evening I've had a bit of cramping and back to red spotting again. Anyone else had this? Seriously getting hacked off with this useless carcas now. Beginning to worry with my age the trauma of the MMC's has tipped my body into peri-menopause. I just want to feel normal again.

I've had a tough Christmas. Few busy ups with OH, better now but lots of tears. He just doesn't understand why it's made me the way I am. I've tried to explain and I think we've made a bit of progress but I don't think he'll ever really get it.

I've had a few more tests done-GP agreed to do vitamin b12, vitamin D, folate and ferritin -all normal according to their standard ranges but I think my vitamin D is lower than it should be as I'm taking a supplement and it's only just into the adequate range, so adding a top up of that. Also paid for one of those finger prick medicheck tests for my thyroid antibodies -again all came back ok. So I've ruled some possible explanations out, but still nowt to suggest why I lost both my babies. Xxx

SJR86 · 04/01/2019 19:55

@Lilimum5 Yes sounds like we are. I didn't ask for my levels when they rang with the results, will ask for them on Sunday for sure.
Does anyone know what level is too low for viability? Trying so hard not to clutch at straws.
The whole situation sucks and it doesn't help I'm also feeling crap with a cold.

Lilimum5 · 04/01/2019 19:29

@SJR86 I think we are on the same page. I'm going for my scan and bloods Sunday. My numbers have gone down today so I think I know the out come. Last bloods was 80 and today 75 so not looking great

Lilimum5 · 04/01/2019 19:27

Bloods today down by just 5 so we are one the wiser, I just hope the bloods and scan hasasnwers on sunday

SJR86 · 04/01/2019 19:25

Thanks @InDreamland

@Lilimum5 yup, this is a new pregnancy-we were very lucky and it happened quickly after our loss in October. This pregnancy is 5 weeks, I don't feel I can put it in past tense until the hospital confirm it's definitely a miscarriage.

I share the feeling - there seem to be very pregnant women everywhere (including a close work friend) and I have to take myself off for a walk every time she has a moan about being pregnant!

Lilimum5 · 04/01/2019 19:25

@Yukka thanks hun. I think there is confusion as to weather this is left over from mmc or this is a new chemical pregnancy. I didn't think it was possible but midwife seems to think it might be the latter of the options. I really hope that it isn't though.

Lilimum5 · 04/01/2019 19:16

@SJR86 I'm sorry I'm not up to date with where you are. I assume that this is a new pregnancy, how far along should you be

Lilimum5 · 04/01/2019 19:13

@InDreamland I totally understand how you feel hun. Thought with all the crap I've been dealing with lately I would treat myself to a hair cut and style. Booked appointment over the phone. Turned up and would you believe it the hair dresser was very very pregnant and I had to listen how it's a honeymoon baby and how awful she feels while I'd give anything to be feeling like that. It's like a kick in the head. Bumps and babies are everywhere.

InDreamland · 04/01/2019 18:43

*pregnant not prefab

InDreamland · 04/01/2019 18:43

@SJR86 Flowers

@Newbie21 thank you. I think it's properly started now, got heavier. Broken Sad why is it everywhere I turn I feel look such a failure and totally inadequate, with prefab g women everywhere and TV adverts assists having perfect families, something I can't have. Hate myself and my life. All I've ever done is my best and do the right thing in everything I do and feel like life just throws it back in my face and says no you won't be rewarded for it. What do I have to do?

Newbie21 · 04/01/2019 18:27

Sorry @InDreamland It's such a tough time. You don't know it's definitely AF until it's in full flow so I'll keep a bit of hope for you. I've been there so just want you to know you are not alone x

SJR86 · 04/01/2019 15:28

I had my scan this morning, no sign of pregnancy either in my womb or tubes. The room they used was the same as the one I had an MVA in which also brought back horrible memories. They've done a blood test which still shows pregnancy hormones but at a low level, going back again on Sunday for repeat bloods. Back to square one!

InDreamland · 04/01/2019 14:49

I think AF has just arrived. Bit of pink when I wiped after using the loo. That's my last chance of being pregnant before first baby's due date gone Sad supposed to be 37 weeks today.

Original poster
Yukka · 04/01/2019 11:52

@ithinkthatsenough just put the @ sign before the name and it tags :)

Yes it’s hard as they say no problem is always better than having a problem but no explanation is hard to live with too. Sounds like a good plan for you, I also started alternative therapies in acupuncture and yoga and they both helped recovery and preparing to be pregnant again, emotionally and physically. Keeping the focus on your own wellbeing is most important XX

OP posts:
Ithinkthatsenough · 04/01/2019 10:35

Thank you Yukka sorry havent worked out how to tag yet! The blood clotting issue has been on my mind because of the timing of the losses,so we’ll see. Finding a reason would be good but preparing myself for no reason being found
Plan is to keep busy, run lots,get super fit ( well try anyway) enjoy a few drinks with friends and try to enjoy life until we see consultant then decide what to do next xx

Chilliandlime · 04/01/2019 09:27

@Yukka thanks so much for the information and reassurance, it does sound like that information on Tommys is out of date.
@InDreamland pregnancy seems to change our bodies in such strange ways.

Original poster
Yukka · 04/01/2019 08:45

@laney79, there are three tests for aps being lupus anticoagulant , anti-cardiolipin and anti-beta-2-glycoprotein tests. You’ve mentioned the first two so check about the last one. You only have to test positive in one plus occurrence of recurrent early mc or one late mc to be diagnosed, but if you’re positive in more than one then you are higher risk of clotting in general.

@chilliandlime if you do a hpt and it’s negative then you know the hormone is gone ( or gone enough) which probably is by now after 6w. On the aps support websites there’s nothing that supports what ‘Tommy’s is saying - it could be a little out of date. In Dr Lesley Reagan’s book (shes pioneered mc testing and trials in the last decade and added a whole new chapter on this subject last year) she simply states that if aps is suspected (ie from first round of tests) then you should refrain from pregnancy until confirmed as chances of live birth without treatment are ‘dismal’.

As pregnancy increases blood flow anyway it also increases the risk of clotting in ‘normal’ women so perhaps this could lead to naturally elevated antibodies and could skew the results, but I’ve never read that or been told that, I’m theorising. Maybe it’s what they used to think and now know it doesn’t impact. It’s so new there’s a lot more to be discovered. I think you’re good to go xx

@ithinkthatsenough so sorry for your losses. Be good for all the tests to be done inc pm to rule things out. I had thought that mc after 12 weeks was fairly rare and would be more likely for a cause to be found, especially as you are clearly fertile in the first place. The Aps clotting condition can be acquired, meaning you didn’t have it before with previous pregnancies but you have it now. It basically cuts off blood supply to your placenta as the tiny veins clot, so a healthy baby will die. Good they are testing the placenta too. But it’s treatable with good success rates if it were the case. Miscarriage being labelled ‘bad luck’ is really tough to deal with and I also thought nothing would be wrong (as did my consultant, he was ready to send me off for donor eggs because I was ‘too old’ at 39). I hope you and oh are getting all the support you need. Keep us posted with results xx

@lilimum5 I just can’t believe this is still going on. When these next results come in please do be insistful and complain about getting some proper testing and ideally to be referred to a specialist clinic that knows what they’re actually bloody doing!!! Sorry, angry in your behalf ❤️

OP posts:
Lilimum5 · 03/01/2019 22:31

Thanks @Chilliandlime @InDreamland @Laney79

If this is how I'm starting the year I can't imagine it's going to get any better. I've all so have the memorial service for my little baby I lost in October on the 13th of this month. Fed up doesn't cover it at all.

InDreamland · 03/01/2019 21:59

@Chilliandlime it's not painful but it's like a strong fluttering feeling and sometimes like a very mild pulling, stretching and stabbing that doesn't hurt. It's very odd. It's all been like this along with the spots since May.

Chilliandlime · 03/01/2019 21:48

@InDreamland during my 1st pg and mc in the summer I got loads of spots on my shoulders and hadn't had any there before, they took ages to go. I also got shingles for the 1st time very early on. Pregnancy hormones seem to play havoc.
Is your lower abdomen painful? Mine has felt sore since the mva a week ago in a way that I didn't have after my 2 erpcs, maybe it's just because the mva was so painful, but it's worrying me. Only had bleeding on the day.