Recurrent Miscarriage Support Thread 30 - Support for Tests, Treatments and Trying Again

[forestnest]

Support, hugs, a wealth of collective knowledge and lots of hand holding as we try again. This thread moves like lightning so prepare to read fast!

Previous thread: www.mumsnet.com/Talk/miscarriage/2441180-Recurrent-Miscarriage-Support-Thread-29-Support-for-Tests-Treatments-and-Trying-Again

(stats etc to follow)

Thanks march and bootles. The support on here is such a lifeline. I know what I'm thinking is perfectly normal under the circumstances. Will let you know how the scan goes. x

Hi, any chance I can join the thread? We have been TTC #2 but as of last Thursday we have now had 3 miscarriages since December last year. We are vry lucky in that e have a 4 year old dd but we just don't seem to be having any luck. Our first miscarriage (which took 6 months to conceive) was confirmed on Christmas day 2014 at what should have been 7-8weeks, we then miscarried again at 11+4 weeks and both were natural because i'd already started losing so they weren't interested in helping me. Last Monday they confirmed that there was no heart beat in what could be seen on the scan so even though I should have been 10 weeks it looked no more than 5 weeks. The care we received from one gynaecologist was brilliant after we lost baby number 2 but she was never on epau when we attended for the scans over the last couple of weeks. I lost all feelings of pregnancy at what should have been 3- 4 weeks into the pregnancy so i contacted emergency gynae as we were advised to do. The hcg levels rose s they should so they referred me to epau for close monitoring and support s my gynaecologist requested, except they were absolutely awful and ive written a 4 page letter of complaint. The gynaecologist prescribed aspirin from 6 weeks once a heart beat was identified but her colleagues started it anyway, and i was started on cyclogest 200mg twice a day as soon as we had a positive test but despite this we had to have an erpc last week. Just feeling really frustrated and naturally devastated. The epau were really rude telling me "ah well its a miscarriage go home, get on with it, take pain killers, its no worse than a period"!! I reminded them that this was our third but they just shrugged their shoulders as if to say so what? Ive had to book a follow up appointment with my gynaecologist because they didn't know what to do, ive also asked my gp to refer to another specialist to get support and advice because we apparently don't have a designated recurrent miscarriage clinic. Don't know if we'll ever find out why this keeps happening but my hospital don't seem concerned. So angry right now!

Welcome Nautius and Rainbow and sorry for your losses. You are not alone, loads of us on here. Nautius that's disgusting of your epu, what a thing to say, they clearly are in the wrong job telling you that. So angry for you. The only good thing about having 3mc if there is such a thing, is that now at least they will do tests. I'm glad your gynae was very good, I hope you can now get referred and get some answers.

Spam!! Happy birthday for Thursday and good luck with the job. I'm so sorry 27th was a tough day, that is odd of your mum to send a card, not sure how I'd feel either, but good she at least acknowledged it.
pop sorry to hear you have this awful worry, I wish you all the best for your scan at weekend, hope the week goes quick for you and that all is ok
Bootles hi!! Thanks for asking after me, the first week after was tough it took me longer to recover than I thought, but all ok now and coils are out on 21 Oct, then we can try again and hopefully catch the nov egg. Hope there's a good one left in there!
Hi to anyone else I've missed. Yes been busy on fb and finding it hard to keep up on here too!
Don't forget the meet up arranged for sun 18th October at Bluewater-all welcome!!
Has anyone heard from mrsB??

Welcome naughtius and sorry for your losses
Wow your experience at Epu sounds horrendous. What are they doing talking to you like that, it's disgusting. I really hope your letter has an effect on them and other peoples experience in future.
Also hope your gynae helps you and makes sure next time their advice is followed.

Hi rainbow and naughtius, welcome. Sorry to hear of your losses and of your awful treatment at the epu naughtius

Welcome back spam, I'm also struggling without the android app. I hear the apple one is very good .
Good luck for the interview!

Minnie I think I'd have opened my big mouth if I was in a group of women whinging about being pg .

Pop hang on in there .

Hi bootles yoga was okay. Wasn't really in the mood to be honest. Looking into a mindfulness course to try and keep me more level headed through the ivf. The lady running it is going to give me a call tomorrow.

Nothing else happening here. Three pg announcements in the last couple of weeks, two of them 2nd babies for couples who didn't start ttc #1 until a year after us.
Got the consultant appointment on Friday to get results and find out when we can start the next round of ivf.

Sorry I've not been on much lately I've been trying not to think about miscarrying again so trying not read to much about, sorry if that sounds a bit selfish because this thread has helped me so much!
barking sorry about the pregnancy announcements the second timers are especially difficult. Hope the mindfulness helps if you decide to do it.
sasha sorry to hear your news it really is shit isn't it. You are not a failure and I'm sure you are a great mum. Have you had testing on any of your mc to suggest that it may be your eggs?

Sorry to see others on here but encouraging to see other pregnancies progressing well, certainly gives some hope x

mrsC have you had your scan yet? I can't remember when it is but I know it'll have either just been or happening soon xx

flower you don't sound selfish. We've all got to do whatever it us to help us survive this.

Moan away Sasha and hugs. You are definitely not a failure or bad mum. It just takes its toil. X

Good luck for your app tomorrow barking - let us know how it goes. Hope the mindfulness lady called and you're booked for that soon.

How are you doing flower? How many wks are you now?

sasha be kind to yourself (and of course you're not a failure!!) xxx

Thanks I'm doing ok bumble I'm just over 7 weeks now, I have a scan on thurs so should nearly be 8 then. Trying not to stress too much!

sasha sorry to hear of your loss, I know what you mean about babies and pregnant people everywhere- I live in a similar area and feel a little pang every time I see a pregnant lady- even more so if she has a toddler DS age as well!
Bleeding has stopped and just waiting for first AF- hoping it turns up soon and sorts out my horribly spotty, greasy skin and oil slick hair! I've never had particularly difficult skin but its constantly oily at moment! I've started a thread in style and beauty hoping for some clothes tips as I hate everything in my wardrobe right now (which is a ridiculous and self centered thing to worry about!)

Nice to hear from you flower, glad all is going well and good luck for Thursday xx

consider, you should do anything you can to make yourself feel better. Mc takes away your confidence in your body in many ways, so i think anything you can do to bring back that confidence has to be a good thing. Hope you get some replies

Hi I'm using the clear blue duel monitor to detect ovulation so I can go to Coventry this month, I have been getting high fertility flashing smileys since Friday so 4 in total, and wondering when it will hit its peak, but Iv just been reading up on it and some ladies have said they never got a peak the first month using it, I'm just worried that I might miss it and don't know when to book into Coventry, and help would be great x

Also thanks for the warm welcome everyone

Rainbow If you need to know then I'd use cheap Opks as well this month. For me they work just as well as the digital monitor --good job as buying sticks for almost four years would be bloody expensive!-

consider one of the hardest things for me has been my skin. I suffered with horrible acne as a teenager and the only thing that ever cleared it up was the pill. They put me on load of different ointments and antibiotics including roaccutane, but nothing ever cleared it. Having been off the pill for so long now, my acne is hideous, but I'm now an adult not a teenager and I'm fed up of it. The acupuncture seemed to help, but I can't justify paying for acupuncture just to clear my skin up, as when it stopped it got worse again.
My acne is very much hormone related, so there's no end in sight until we've stopped TTC .

flower thinking of you for Thursday .

I've already posted on fb, so apologies if some of this is old news.
Update from clinic appointment on Friday.
I was positive for mthfr heterozygous - I have the mother fucker gene! But just in one gene, not both. This means I need to take Pregnacare max, as it contains metafolin.
They found high nk activity - the killing capacity was elevated to 32% and there was also a modest rise in the levels. This means I'll be on prednisolone.
And if that wasn't enough, I also had significantly increased levels of Th1:Th2.
I'll be on intralipid infusions.
Essentially my immune system is on high alert and kicking off at anything. Good for me, but not for any embryo.
I'll also be on clexane, but I can't remember which of the above prompted that as I was going to be taking it anyway for the factor V leiden so I wasn't listening too carefully to why as it was irrelevant.

Any or all of the above may have possibly been a factor in my miscarriages and failed treatments.
So in a way, this is good news, there's something to treat. I'm trying to ignore Robert Winston's voice in my head saying this is all unevidenced bollocks (I'm paraphrasing him) and a money making scheme by the clinics. There was one test (the antibodies) that came back negative, so it's not like they were all positive...

The nurse called last night and I've got an appointment with her next Tuesday to go through everything. I'm probably having the scratch on 22nd or 23rd Oct, and starting downregging on 23rd Oct. Off to Morocco for a week with my injections, then coming back for the 1st intralipid infusion. Stims should start around 6th Nov, EC predicted roughly 23rd Nov. They don't open weekends so I'm definitely going to need time off work (helpfully fell on a Saturday last time!)

Interestingly, he said try your gp, see if they will prescribe the fragmin/clexane. Worth a shot!

So, I'm going to be taking all the drugs!

Sorry for long post... Need advice re: protein S levels. Hoping someone here has some knowledge or experience of it please.

I'm in the UK and am almost 38 yrs old. I have one son age 3. He was conceived via IVF but my pregnancy was trouble free.

I'm currently 9 weeks pregnant and had a private scan at 8 weeks when all was looking good. I've been taking low dose aspirin since I found out I was pregnant, as well as progesterone supplements, due to two miscarriages in the previous 10 months (one IVF pregnancy lost at 6weeks + in November 2014 and one natural conception lost at 9 weeks in June this year after heartbeat seen at 7 weeks...) My GP (family doctor) prescribed both due to the previous losses and after consulting with the hospital consultant who deals with recurrent miscarriage. The GP also ordered a full thrombophilia blood screen but this was done when I was already 5 weeks pregnant. All came back fine except Protein S which was very slightly low at 60. The GP said normal is 63. She consulted a haematologist who just recommended repeating the test as Protein S is known to fall in pregnancy. I got the results of the latest test yesterday and it's down to 19. I was shocked and stressed. GP spoke with the obstetric haematologist at the local hospital who said no need for concern at this point as I'm still in the first trimester but wants to see me before the second trimester for further tests and monitoring. Said keep taking the low dose aspirin 75mg daily. I'm only partly reassured though despite this expert'a opinion. I've read people taking lovenox etc from BFP and earlier and with higher protein S readings than mine. I got a second opinion yesterday from a professor of fetal medicine who I saw privately after my 2nd miscarriage. His view is that I should take the lovenox from now and continue the aspirin too. What do I do? Whose advice do I trust? What are dangerously low protein S levels in each trimester please? Thanks in advance!

Welcome need, and congratulations on your pg. I'm sorry, i have absolutely no knowledge of protein s. Had the drug the second doc is telling you to take got any side effects or could it be harmful if taken unnecessarily? If not, I'd be tempted to take it anyway, but that's not a medical opinion, just me! Hopefully someone with some knowledge will come along soon.

Rainbow, I've not used them but definitely heard of people getting lots of highs before the peak, so there's still time. I would agree that the cheapy ones are really good, but perhaps it's too late to get them delivered this month. I would say if it goes straight back down to low without the peak then give kerri a call to see what they suggest, she might just take the day before the drop as ov day or something, but i still think you may well get the peak in the next couple of days. Fingers crossed

Hi need welcome and congratulations on your pregnancy! Sorry you are having the worry about your bloods.
I've been diagnosed with borderline low protein S, but like you, I was tested when pg. As far as I understood it, the clinicians tend to not make too much of blood tests that are taken when you're pg, as pregnancy can hugely influence the results. That is certainly the opinion of the obstetric haematologist that I'm under.
As far as I know (disclaimer: mostly from Google!), protein S levels range very widely - not pg: 65-140, 1st trimester: 57-95, 2nd trimester: 42-68, 3rd trimester: 16-42. It also depends how much free protein S vs bound protein is around, as this affects its activity. In the scientific literature, the consensus appears to be that protein S levels fall during pregnancy, esp in the first and second trimester.

The positive thing is that your consultant is aware of this, and they will keep monitoring you and do further tests - you say before the 2nd trimester, so that would be soon, given that you are already 9 weeks! You are taking aspirin, so there is some anticoagulant treatment in place. I would push to have that appointment with your haematologist asap and discuss your concerns with him/her. There is obviously the potential risk of you developing a blood clot. And, given that you have had 2 mcs, there could certainly be a case for you to take heparin (dalteparin or clexane), as this has been shown to help with recurring mc... Lots of people on this thread are/have been taking it, but I have never heard anyone being given it for low protein S.

The heparin is usually prescribed from 6 weeks to treat issues with recurring mc and/or a known clotting disorder, and from BFP, if you have had a DVT in the past. I don't know how it works with a protein S deficiency, sorry!
Sorry if I can't give any more specific help - in the end, it will depend on you which advice you go with. It is so annoying if a second opinion differs so completely from the first... Who to trust more?

Thanks for your response cloud. I went back to GP today and she's now going to speak to the fetal medicine Dr to discuss his advice vs the haematologist's. Hopefully we'll have definitive advice soon. The different ranges you posted are interesting and it would seem that my level of 19 at 8 weeks is low (as opposed to borderline) for the first, and even the second trimesters! I'm inclined to push for the clexane so long as there's no risk of harm, even if you take it because you're borderline or 'just in case'. Definitely not helpful having two, different, expert opinions!

Hi all. I think this is the place for me now. I've just had my third MC this year - at 6 wks in May and July and 12 wks in October - all natural and spontaneous. I had chicken pox during the October MC. I have a son who is 2.5 and no issues at all with conceiving or carrying him.

The EPU which has managed my miscarriages has referred me to the consultant for further investigations. Does anyone know what I should expect from the first appointment?

Welcome carrot, but so sorry you have to be here. Do they think the chicken pox might have caused the latest loss? How awful for you anyway.
The normal rmc tests are the basic clotting tests, some antibody tests and usually a scan of your uterus to check for abnormalities. I'm sorry to ask, but did you get a chance to keep any of the remains of the last loss to get them tested for chromosomal abnormalities? It's a horrible thing to have to do, but sometimes it can help.
If you aren't having the foetus tested then you might be able to push them to do karyotyping on you and your partner. The protocol is normally not to test the parents unless the foetus indicates a genetic issue, but for my mc3 they couldn't culture the cells, so i managed to persuade them to test us instead. This kind of issue is quite rare though (mine was negative).
At the appt they will go through your history and will take quite a lot of blood for the tests. If they are doing karyotyping on you and your partner they will also need a sample of blood from him. Every area seems to be different in how the appts work. Some take the blood at the first appt and you get a follow up appt with results. Mine was just a single appt and the results were sent out by post, so just in case you get the latter approach, make yourself a list of questions before you go. This should include how you contact them in future, how they will support you through future pgs, what happens if you mc again and what treatment they are suggesting.

The appts can take a while to come through. I hope you're not waiting too long, although it sounds like you've had a tough year and perhaps an enforced break will be good for you right now, even though it is frustrating. It was this time last year (a year ago today in fact) that i had my third mc and joined this thread, so it's been on my mind a lot today. So sorry you're going through this too.

Many of us have also been to Coventry implantation clinic or various private clinics, there is a link to a google sheet on page 1 of the thread, at the top of the stats post with some more info. I was diagnosed with high uNK cells at Coventry and am now 17 weeks on their treatment protocol (steroids, heparin, progesterone). I would recommend them as another option if nothing is found in the nhs testing. I honestly don't believe I'd be here without them. Sorry for the massive essay. This is probably a lot to take in right now, so just take care of yourself right now and if you have anymore questions then feel free to post again. Big hugs x

Thanks marchgirl. No chance to do any foetal testing. They've already made my appointment for mid-November and will do another routine scan through the EPU after my next period because there's a small bit of lining that hasn't come out yet but it's too small for them to do a d&c.

So blood tests and see what happens...

I'm sorry this is a sad anniversary for you. Keep well

Hi all sorry i've been away writing a very cathartic formal complaint to the trust about our vile experience recently. I am wondering what to do next? I am still healing without putting people off their dinner, post erpc, but should we hold off trying again because of potentual investigations now we have had 3 miscarriages? We are due to be seen by gynae at the end of November but have the opportunity to see a private consultant once ive had a "normal" cycle so i'm hoping things start coming back alive pretty quickly. It takes us a few months (up to 6months) to be able to conceive between miscarriages so do we go for it as soon as my cycles return to normal or do we wait for the gynae appointment? Any advice gratefully received. We are not in England so I am not sure what people mean when they talk about the Coventry protocol?

Hi everyone! I haven't buggered off, I've been on holiday and got back a few days ago....horrid holiday tbh, moved hotels within 5 hours of arriving due to it being dirty and not as described, they stung us for 4 nights to move, when we were barely there 4 hours! When we got to our next hotel the rest of the holiday whent as follows: It rained and thundered 10 days out of 14, the pool was so cold I couldn't even get in it, the spa was not a spa at all, someone's half assed attempt at building a spa, the food was mostly fish this and fish that! Obviously I couldn't drink to ease the disappointment.... Only English channel was bbc news on loop so stuck in a room for the majority was not fun....

I cried so much and wanted to come home within a week! Soooo happy to be home!

Hope everyone's doing ok? I must admit that being away from mn has done me some good, has stopped me over obsessing about baby....so I will pop in once a week from now on I think, so forgive me if I miss the odd post etc....xxx

carrot oh hun, I'm so very sorry to see you here! I would say that the chicken pox virus may very well have had something to do with it, the chicken pox virus is part of the herpes virus family, along with glandular fever (which I'm sure is why I lost my last one) when a virus of this strain attacks the immune system, our bodies can struggle to sustain a pregnancy as they are too busy fighting a virus that attacks our cells......

I hope you get the tests you need lovely, good luck for the future xxx

Thanks for your advice yesterday. Just to update, GP has spoken to the fetal medicine Dr and has prescribed me 40mg daily of clexane. Feel so relieved!!