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)

Bump

Hi all

I'm not able to add people to the FB group any more. I'll try to be around here a bit more though to see if we can get this thread moving again.

Hi Carrot,
I've noticed the thread getting very quiet too and happy to be a bit more active, to encourage others to write more
xx

Just to let you know I've changed my nickname (formerly annaif)
Hope everyone's doing well x

I would like to join you if I can please? I've read threads before but never contributed. I found writing a thread the other day hugely helpful. I do feel like a fraud compared to some of you ladies who are having a much harder time than me.

My history is two mmcs, the second was last week. I don't want to try again before I have some answers because I don't want to lose another baby when it could have been prevented.

I called Coventry yesterday. They have two clinics, the implantation clinic, which is self referring and tests for NK cells (costs £360) and the miscarriage clinic which requires a GP referral (and I think tests for clotting issues - am I right?). I spoke to my GP who wasn't sure that she could refer me to the miscarriage clinic because I'm in London and don't fit NICE criteria (3 mcs). I am waiting for my GP to confirm either way - anyone know the protocol for referrals?

Hi, please can I join too. I have dd who is 2.5 and then 3mc, all early and natural and weirdly all really different. With the last one being the hardest by far.

Been referred to hospital for tests, which were shambolic....lost tests, referred to wrong clinic. Upshot is need to wait until sept for appoint.

Going to try cov as was recommended on here on a thread I started to ask for advice (hadn't seen this thread) and people were really helpful. Waiting for my cycles to get back to normal - I am still in a mess from april's mc, then it's Coventry for me. X

Dear All,

Greetings and good luck to everyone on this list whatever stage you are at.

I went through a long miscarriage journey a decade ago. I had 5 MC, a DS at the age of 42 and 3 more MC before giving up. Despite the awfulness of 8 MC I feel incredibly lucky and wish all of you the same (only not as many MCs.)

I've come on because I have some MC and pregnancy related books which I could take to the second hand shop, but I'd rather give to someone on here. They are

Coming to Term - Jon Cohen
Natural Solutions to Infertility - Maralyn Glanville
Fertility and Conception - Zita West

I live in East London, please pm me if you are interested.

best wishes

Dance

Hi ladies,

I'm new to this to please bear with me! My story in brief is that I have a DD who is three, and since have had 2 consecutive miscarriages. One at 8 weeks and the other at 12. Both quite traumatic and the latter resulting in a D&C and further infection. Fast forward another 6 months and I have just found out I am pregnant again (almost 5 weeks). The 2 friends I have confided in have congratulated me and are excited, but all I can feel is anxiety and am completely expecting the worst. I have already been to the midwife and she told me I won't be eligible for early scans or bloods as I haven't had 3 mc in a row.

I'm sure my anxiety is likely to increase the risk of another mc but how on earth do you not worry? I'm sure so many of you have been through this or worse, I just don't think I can wait another 8 weeks for any sort of reassurance. My first MC I lost all my pregnancy symptoms at 6 weeks and bled 2 weeks later, the second I lost my symptoms at 10 weeks and started spotting at 12. So naturally now if my boobs feel slightly less sore, or I am not feeling tired/ needing the loo enough I go into major panic mode. Possibly I'm on the wrong thread as an anxious pregnant person, but any support, advice or shared experiences would be great to calm me down a bit. I would love to be able to give anyone who needs it some hope too and get this one to stick! Thanks x

Hello.

Please may I join too? My stats

MMC at 11w3d on the 17th october last year
Then 2 early miscarriages at 4w4d and 4w5d on 24th December last year and 24th April this year.

38 years old.

No other children.

ttc - 13 months.

I had bloods taken last week at the RMC and should get the results back at the end of July some time.

Sarah Congratulations, I hope this is the one for you. If I ever get to the stage you are at I will be crapping myself too. I am sure there are lots of people to help on here, there is also a thread in Pregnancy for people who are pregnant following a miscarriage. Don't know if you have found that one yet. It is called Staying Posifricketific or something like that. I have yet to make my way onto that one yet as my subsequent MCs have been too early for me to feel like making the step.

Hi Brenna,

I'm sorry to hear of your losses and thanks so much for your wishes and the tip of the other thread. Possibly too early for me too as only 4w5d but I am going to have a nosey.

Hopefully the your bloods don't show any problems or if they do, that it's something straightforward and treatable. I am sending lots of positive thoughts your way and to all of you other ladies too and hopefully we will all see each other in the other thread very soon.

S x

Congratulations Sarah. I hope you find a way to get through these early weeks.

Hi brenna and wait - do you know what blood tests were done? While I wait for my GP to get back to me on whether I can be seen on the NHS, I'm investigating how much the tests would cost privately.

Thank you Dance. I hope someone takes your kind offer.

Thank you Sarah

Initially they are genotyping me for Factor V Leiden and prothrombin mutations, testing my clotting, doing a thyroid screen and looking for anti-phospholipid, Lupus and anti-cardiolipin. If those show up nothing then they are going to karyotype myself and DH. She also pointed us towards Coventry in case we want to do NK cell testing, which we would have to go private for as the NHS currently doesn't pay for that.

Thanks Granadilla and I'm sorry you've had to go through this too. I'd be interested to hear if you get anywhere with the doctors referral as I was told a flat 'no' after 2 mc's, I didn't look into the private route though. I have seen some stats somewhere that show that even after 2 MCs, your chance of a successful pregnancy on third attempt is quite high but I completely understand your worries. I don't feel ready or confident at all! Best of luck to all of you

hello everyone, welcome to the ladies that just joined the thread, hopefully you will find lots of useful information here- alongside hand holding and general support.

On the subject of after how many mc's can you get referred for NHS investigations: I was seen at St Mary's after 2 mc's, however the reason I was able to get referred after "only" two was that one was a late one at 20 weeks.

"Brief" history of events for me: I have a healthy 4.5 year old DS conceived naturally and unplanned. We tried for over 15 months for baby #2, had a missed mc found out at our 20 week scan. Post mortem was clear but showed a slightly smaller than normal placenta.
Got pg again immediately after, lost that baby at 9.5 weeks.
Was then seen at St Mary's where all the thrombophilia tests came back negative; hysteroscopy didn't show anything either.
Also got seen at UCLH where similar tests were repeated, had a 3D SIS scan which came back clear and showed good ovarian reserve (I have PCO's but not PCO syndrome); DH had a sperm analysis which came back normal too.
We were told to try again and had another mmc (our 3rd) as a result (on heparin, aspirin and progesterone in the last pg)
Since then I've been at :

1. Dr Shehata's who found high NK's during pregnancy,
2. Coventry team, who gave me the endometrial scratch and found borderline elevated uNK's and to
3. the Lister (seen by Dr Thum) who sent us for blood karyotyping tests (results due mid July)

I started on Shehata's protocol for a couple of months of ttc after a break of 6 months or so, but stopped it upon Dr Thum's advice that I don't need such high dose of prednisolone before a BFP (I don't have elevated NK's in a normal state, only when pg)

Also used progesterone for 3 consecutive cycles of ttc as per the Coventry plan and stopped that, as the Coventry Profs advise that it may start acting as contraception if used for too long. If nothing happens by the end of the summer, I'm going back to get a repeat scratch.

I was also diagnosed with Hashimoto's and sub-clinical hypothyroidism earlier this year, which may have contributed to the losses- so taking high daily dose of levythyroxene for that.

Currently decided to take it a bit easier with trying too hard, so only taking my daily supplements (Pregnacare, high dose of VitD, Omega 3 and aspirin daily as per Dr S's advice+ some coQ10/NAC/myo inosytol for better egg quality) and doing nothing else.
If/when another BFP ever happens, then I will start with the pred again, progesterone, heparin daily and intralipid drips at 4, 8 and 12 weeks (and someone pass me the sink please)

Best of luck to those trying, happy to answer any questions that may be in any way related to the above treatment plans.

xx

Thank you bubaki. Why did you see both Dr Thum and Dr Shehata? I have come across both of their names, but would ideally see only one consultant. But it is concerning that they seem to give conflicting advice. Do you have a preference for one over the other?

Hi everyone, I really wish there wasn't a need for this thread, I hope that everyone one of us gets our happy endings so to all of you

Hope it's ok to join?

I'm 38 ( soon to be 39)
DP 35 (lucky sod!)
Ttc #1
3 mmcs - August 2015 (6+3) November 15 ((7wk) June 2016 (9+3)
Ive had blood tests done and I've had scans to check everything is ok.
The foetus that I have just miscarried has been sent seat for genetic testing. Stupidly I felt guilty about sending it away to be looked at.
My GP has referred me to the recurrent early miscarriage clinic and I'm currently waiting for an appointment. My question is where do I go from here? I'm willing to go private, I've been looking into Coventry but I'm not sure if I should wait for my appointment to come through for the miscarriage clinic and also for the results of the genetic testing. I feel that because of my age, time is against me and I don't know what to do first. I'm not in any rush to start ttc again but I do want to do everything within my power to rule out or discover any problems.
Any thoughts would be very much appreciated.

hi Granadilla,
I went to Shehata on the basis that he's based in London and has a huge success rate. After seeing him twice and having done all the £££ blood testing for NK's, my husband mostly felt that we were rushed and didn't quite get the attention that we expected from him. He also felt very nervous about the use of steroids- especially as I don't really need them before conceiving as my NK's are not elevated when not pg. And Coventry only advise to start them from BFP anyways.

Also, we were told that his clinic was "closing for refurbishment" over the summer which meant needing to go to Epsom for every consultation- which I know is not a big deal to some as lots of ladies travel from quite far to be seen, but it's a bit of a logistical nightmare to us, both of us work full time, have to deal with preschool runs and have no family around to help out. And I didn't feel like dragging my 4.5 year old DS to the appointments.
Bottom line, we didn't feel very confident or comfortable continuing with him under the circumstances; having said that, if I get a BFP I may very well go back to his care.

Dr Thum was very highly recommended by another lady I "met" through another rmc forum- support group. So I thought it would be worth giving him a try as he uses similar treatments to Dr S and is based in London.

Welcome samk15- I am sorry to read about your losses. I appreciate the need and urgency to get some answers and take the right steps forward without losing time. My post below may give you some ideas on where to go to get certain tests done. One thing I would say is save your time/money if considering going to St Mary's in London, as their approach to RMC is quite conservative and out of synch with the latest reproductive immunology theories (which make a lot of sense for ladies who have had uncomplicated pregnancies at first, followed by unexplained rmc's)
Good luck! x

A new secret FB group has been set up to support women going though this grim old process. To make sure it stays reasonably manageable there are some ground rules:

1. Women only (which means no shared accounts)

1. What's said in the group , stays in the group

1. Be sensitive to other people's triggers so no scan, bump or baby photos please. If you want to share these with someone in the group, please do so over PM. Pictures of sticks you've peed on in the thread's comments - post something like 'trigger warning - photo in comments but it's good news' and then put the photo in the comments

1. This is primarily a community for women who've had multiple miscarriages. Talking about other stuff is fine, but please don't clog up the board so people can't find advice.

If these 'rules' sound ok to you and you'd like to join then

How to be added

1. Members are free to add people they know personally (including people they know from other forums) as long as they are women who've had multiple miscarriages. If the group starts getting unwieldy and too big to manage then the admins might have to cap the numbers

1. If you want to join but you don't really 'know' anyone then pm MamaLazarou or Bubaki76 with a short bio, they will post it in the group for a couple of days in case anyone has a massive objection. If no objections then they will add you.

All that being said this thread is a great place to build a community

Thank carrot. I think I will stick to MN rather than facebook - I like the anonymity.

SarahBee - I heard back from my GP about referral after 2 mc. I have other mitigating circumstances too, so he said he would try and refer me but isn't clear whether the recurrent miscarriage clinic will accept me. He said it would take several weeks to hear back. At the moment I'm OK with that as I figure my body needs time to get back to normal after this mc before doing testing. If it turns out to be a "no" from the mc clinic, I will look at private options which hopefully will have a shorter lead in time.

Hi Ladies,

Another new poster.
I've just had my third miscarriage, losing my fourth baby in 8 months:
Pregnancy 1 (11wks) Twins, missed miscarriage resulting in D&C
Pregnancies 2 & 3 (both 6wks)

I saw my GP today, who has referred my to a consultant Obstetrician in Coventry. Google tells me this consultant also does the NK tests, which I'm considering.

I'm at a loss with myself and my body at the moment. I feel hopelessly hopeful that we will have our baby one day soon. But I also feel very empty a lot of the time, nothing else seems to matter...

Hello Grey, so sorry for your losses and you've had to find your way on to this thread.
I'm in a similar position in that I've had 3 mmcs and no living DC. The feeling of loss and desperation is so hard to take. Just wanted to let you know you are not on your own

Thank you :) It's great to have somewhere to read through other people's experiences and feel less alone. My husband has been amazing, but I know he also struggles and I don't want him to feel he has to be strong for me, so it's good to have this forum to vent on to...

I'm sorry that you find yourself in this position too... It's truly horrible.

Hopefully we will both get what we long for one day

Hi there

I hope it is ok to post here. I was part of this group about a year ago and had wonderful advice. I had 3 mcs. The NHS wait was a year for help so we went private and I asked for progesterone, clexane, preds, aspirin prescription as we had called pregnant and had had routine blood tests done but not HSG yet etc. I took these (per advice I got on here) and we now have a beautiful baby that we are very great ful for.

We found out we were pregnant again a few days ago and this was a wonderful suprise. I'm not under a consultant again and wondered if anyone could give me some advice on what the current medication recommendation is for unexplained previous miscarriage. Any advice greatly appreciated as I really want to try my best to keep this pregnancy. I hope no one minds me posting here but it was the best place I got advice from last time. Thanks x

I am currently miscarrying at wk 8 as of 3am this morning (scan showed wk 6 growth) and stuck out in the USA. This is all pretty difficult and I am feeling faint, tired and cramping. I was up all night, pretty sad and I've been told not to fly for a week so can't head home.

Should I ask for a D&C? They did not mention it in hospital. The Dr just said leave m/c to natural causes and to call in if any symptoms get worse or continue beyond 24hours.

Are there any tests I should ask for? Reasons for m/c etc.,

First pregnancy, a little lost :(

Thank you

Hi everyone,

I've been lurking on mumsnet for years without posting as I've managed to get the answers and support I've needed just from reading people's stories and wonderful advice.

I don't really know why I'm posting now or what what I want to get from this but here goes!

I've had 3 mc's in the last 2 years, no DC. The first 2 happened in close succession and then we waited a year before trying again but it happened again. The first was at 6 weeks and the other 2 were mmc's at 9 and 10 weeks but neither had developed beyond 6 weeks.

I'm having investigations at my local rmc hospital clinic. My blood tests for blood clotting issues and hormone/thyroid issues have all come back normal and I've just had a scan to check womb and ovaries. The sonographer said I had a slightly heart shaped uterus, although she said there's no link to rmc. According to what I've read though it can be a factor but I'll have to wait for my next consultant appointment in a couple of weeks to discuss it. They've also mentioned hyper fertility as I fall pregnant immediately each time.

On the outside I've coped pretty well with all of this...DH and I have bought a house, gone on holidays and I've been promoted at work during this awful time. I know that makes me sound so lucky and I am. My DH is wonderful and I love him so much. But I'm struggling more and more on the inside and starting to wonder if we'll ever have a baby. I'm 35 and DH is 40.

I feel like I'm fighting hard to not let it ruin the other parts of my life but it's a struggle and I'm thinking about it more and more. Some days it's like a physical pressure on my chest and it's so hard not to cry at work.

I think that the Consultant will tell me to go away and try again and while I'd like to it's just so scary. I don't know if I can believe that I was just unlucky, it feels like it will just happen again. How will I cope with the anxiety in those first few weeks?

Would you try again in my position or go private for further tests?

Thanks for reading if you got this far, it's been cathartic writing it all down.