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)

Hi, I posted on one of the previous threads, then went off to have a couple more mcs, like you do... So am now 41 with 5mcs. Joy.

Just about to start the Mr Shehata complex treatment plan, is anyone else on this? I've had prog before but not pred or intralipids and would feel better if I knew what to expect. I'm feeling pretty cynical about the whole thing especially since I had some ovarian reserve hormone tests done by my GP surgery on Mr S's advice and discovered my FSH is 14.3 which, after a Google, appears to be pretty terminal. I followed the googling with a massive crying meltdown and almost a whole bottle of wine, which almost helped, but still feeling pretty shaken by it and wondering if there's really any point spending £1000s on treatment that is probably doomed to failure.

I have been recommended the pred thread, is this it or is it a separate thread?

Congrats to any here who are currently pregnant, commiserations to any who have mcd since I was last here.

Have I killed the thread? How did I do that?

I don't know the pred thread but in a similar situation to you. Two MMCs and two failed FETs. Just had last one put back in on Fri. I'm on pred and prog and intralipids plus a whole host of other drugs via a private fertility clinic. It is expensive and there are no guarantees as you well know. I was diagnosed with very high killers cells and the IVs have brought them down.

Are you able to conceive naturally? Sorry to hear about your loses. So tough x

Also the IVs are a total ball ache! A random nurse at your house for three hours! Annoying!

Username yes, can conceive naturally but not keep it. And I have to do back to the clinic for the IVs, Mr Shehata said they had to be administered thee. Would far rather it was at my house but can understand that feels like an invasion.

Are you having the Chicago tests done?

Hi All,
Do you mine if I join - feeling a little bit lost and bewildered with it all - can totally connect with all you said above starsandbellinis
Firstly, sorry for all your losses and struggles, I do totally sympathise, such a horrible heart wrenching time - was v positive to see so many pregnancies and babies in the stats at the start of the thread though.

Me - 37
DH - 37
MMC - Aug 15
bled on and off until Dec 15
Natural MC - Jun 15

TTC again but no join so far, trying to stay relaxed about it but struggling.
Went to docs today for referral but he wasn't the most empathetic and said I'd be lucky for them to accept me after 2 (I do know the guidelines say 3)

Any advice. I've had some acupuncture recently and want to carry on with it - to keep me calm if anything. And am taking lots of vitamins etc

Anything else I should try? I've read recently about asparin?

Hello all. I am just popping back. I am a graduate of this thread, and after 4 unsuccessful pregnancies I had my daughter last year. She is pure joy. But I still remember the sadness and I know that more women join this thread every week. So hang in there. It can happen, and even if it doesnt you can lead a life full of other joys. Good luck to you all.

Hi all, I have posted before under my previous username gemima78 the last time I was pregnant. Unfortunately the pregnancy ended despite using pred, soy bio is now aged 38, 1 DD aged 6, 5 MC, and pregnant again. Not doing pred this pregnancy as the side effects for me were just not manageable. This time we're taking our chances on cyclogest, aspirin and clexane.

Like StarsandBellinis I'm a frequent lurker and find these boards an invaluable support.... Just knowing you're all out there somehow helps me manage the loneliness of it all!

Currently 5+4 and scared witless. I have symptoms but don't trust them one bit! Have a scan booked for 2 weeks time. Was offered sooner but don't want all the worry of not seeing a heartbeat due to scanning too early, esp as my cycles cam be irregular.

jbee664 yes alot of us take baby aspirin (75mg) as it is recommended by many recurrent miscarriage consultants. Epsom hospital also advised me tl take vitamin d at 2000 ui per day and pregnacare plus which includes an omega 3 supplement. These were part of the standard recommendations to be started prior to trying to conceive (3 months before I think), and then to continue in pregnancy. Obvs I'd say probably best to run the high dose vitamin d (and possibly the aspirin) by a doc first to check theyre ok for you, but if you wanted to proceed with the vitamin d I get a good quality one which absorbs well from SunVit.

Hello hoping for some advice. I have had 3 mc - first 10/15 at 5wks 2nd was mmc at 12wks 2/16 and the last 8/6 at 7wks. I was referred to recurrent mc clinic had to wait 3 months for first apt and was a bit disappointed that they only asked a few questions ( that they already knew answers to) then sent me for bloods saying to come back in 8 weeks. I was warned not to get pregnant before next apt otherwise I will be discharged. Another 2 months before trying again seemed ages but figured it's better to wait and be supported through next pregnancy. However got my apt today and it's for the end of December! Double what they said. When I called to see if there was anything sooner I was told no. I am 40 and if we don't try again until after the next follow up we would have lost 6 months. Feel really upset ( my husband cannot understand why - I'm hoping you ladies will understand) My question is should I wait for the next apt or just have another go? Or would I be able to ask for my results in 6 weeks over the phone?

Hi Danlsb, I totally get it, the waiting is so frustrating especially when you don't know if there'll even be a reason found at the end of it.

If it helps though I phoned and got the results of my blood tests 2 weeks after they were taken even though my follow up appointment wasn't for a couple of months. I also had a scan during that time, are they doing this for you?

I've now has the follow up appointment and they want to do a hysteroscopy. It'll take a couple of months to get the appointment for that through so it's back to waiting again. Which sucks. But at least something is happening I guess .

Thanks for responding. The wait is awful esp as friend keep telling me about people who have had 3 then got pregnant and been ok. I have had first lots of bloods taken. Have to have another test on 2day day of period and am waiting for a scan apt. Will your clinic still support you if you get pregnant before your next follow up? We're your blood test results easy to understand?

Sorry got interrupted before I finished. I hope all goes well for you and they find something that's easy to fix without too much more waiting.

Yes they just told me that my blood tests were all within the normal range and therefore nothing to worry about.

They've recommended that I don't get pregnant while I'm still having investigations but said that it's not the end of the world if I do. I'd rather wait just in case though as another pregnancy and God forbid another miscarriage would set me back a lot longer. Plus like you said there's still a chance they'll find something that can be fixed.

Good luck to you too. It might be worth keeping ringing your recurrent miscarriage clinic just in case there's a cancellation?

Hello - just wondering if anyone else has had the NK test at Coventry? I went today and saw Dr Bronsens - wish I had taken someone with me as can't quite remember / ( bit confused)what he said! He has given me some progesterone so if the test come back normal I can use it from 7po. However the scan showed good womb thickness which is what I thought progesterone was given to help with ? I am hyper fertile so get pregnant very easily so does that mean my levels are high?- have not had progesterone levels measured so not sure I am low, average or high. Although I must say leaving clutching my bag of progesterone made me feel more positive - like I had something I can try. Must not ttc until the results come back incase I need another biopsy 🙁 I guess 4 weeks isn't too long to wait. I have had tests done at my rcmc but follow up appointment is not untill end of December! Sorry for long rambly post 🙂

Danslb I haven't been to Coventry but just to say that progesterone helps to keep the womb lining thick after ovulation, to support a pregnancy - it doesn't help it get thick in the first place (that's the job of oestrogen before ovulation)

The only thing to remember with progesterone is that you will need to POAS at 14 dpo because the progesterone can keep your period away artificially, so you need to test to see if you should stop the progesterone (so that a period can come)

Hyper fertility doesn't necessarily mean your levels of progesterone are high - did Prof Brosens talk about their research into stem cells? They found that some women who suffer RPL have an 'unfussy uterus' that lets faulty embryos implant (that it should reject). They believe the endometrial scratch can help with this I believe.

Sorry for barging in I'm a lurker - but now unlurking

I'm 34, and over the last 12 months I have has 3 IVF cycles, 1 cancelled IVF cycle, 2 cancelled FET cycles, 1 successful FET cycle, 2 pregnancies, 2 miscarriages, 1 ERPC and 1 hysteroscopy

mc 1 was a MMC @ 10w in Mar - tissue testing showed the baby was chromosomally normal

mc 2 was confirmed yesterday - it's really a chemical pregnancy, as I'm only 5w, but hCG levels were low and stopped rising, so I've stopped my meds and will wait for nature to take its course. The embryo was a PGS tested blastocyst so was chromosomally normal

All my level 1 immunes were clear, my level 2 immunes showed marginally elevated NK cells so we treated empirically with pred and intralipids (+ clexane and aspirin) this cycle.

It's likely that my biggest issue is the endometrium as I have issues growing and shedding decent lining

I think the pred and intralipids may have over suppressed me as last time I didn't have any immunes tx and did successfully propagate a pregnancy - whereas this time it didn't really properly implant

I'm on thyroxine to keep my TSH

Thanks for your helpful responses. Yes I was told to test when period would be due and if negative to stop progesterone.
Banana fish - really sorry for your loss it's so hard and such a emotional and physical roller coaster. I hope you have lots of love and support around you to help you through.

Hello,
I have had 5 miscarriages over the past 2 years with no living children. Both me and my partner are healthy 22 year olds so having recurrent miscarriages was a massive shock.

I last miscarried in August and had a D&C on the 23rd. I have an consultant appointment in Novemeber. This is my first one. What tests do they run? Will I be okay going on my own or shall my partner come?

Thanks

Hello really sorry to hear of your lost babies. I took my husband along to my rcmc appointment but they said they did not need to test him or ask him any questions so you could go on your own. Although if he is available it's nice to have some support esp as talking about your losses is upsetting.
I found the initial consultation very disappointing as I had waited for the appointment for a while and they didn't really ask me very much or tell me much other than that we were not to ttc until next apt- it was over in 10 minutes.
I had blood tests for clotting, thyroid, full blood count, antibodies, lupus, diabeties and then I had another blood test on 3rd day of my period which I think she said was to check hormone levels. I also had a scan ( 6 weeks later) to check my womb and ovaries. Unfortunately I don't have any results yet as despite being told I should come back in 6-8 weeks the next available apt. Is not until 30th Dec. I hope your clinic does not take as long. I have also paid privately for the Coventry killer cell test as I am getting on a bit so don't want to wait too long to try again.
Good luck I hope they find something fixable and you have your baby in your arms soon. x

Hi everyone,

I've also been lurking for a while. Decided to come out of the shadows and maybe get some different perspectives on my situation. I recognise some user names from previous posts in body and soul/giving up ttc and so on.

Firstly may I present the usual commiserations for the situation in which we all find ourselves. Reading everyone's stories similar to my own is both comforting and disturbing.

Recurrent miscarriage, being one of the 1%, has had a catastrophic effect on my well being, career and relationship. I am lucky enough to have a 2.5 year old daughter who was conceived via IVF. I am grateful that my miscarriages have occurred at 9/11 & 8 weeks and I have not had to endure the horror of a stillbirth or late miscarriage.

Saying that, I am at a bit of a crossroads and would welcome any pearls of wisdom that your experiences may have given you.

3 consecutive miscarriages since having my daughter and I've been to Coventry (results pending) and had the NHS standard RM tests over the summer. The results of my bloods were all within normal ranges, except Fibrinogen, 1.64 (under Coagulation Screen, normal 2-4.5). Does anyone know what this means, I.e. do I have a clotting disorder? Due to an admin error I had my follow up consultant appt before all the results of the bloods had come back. Normally I would be on this and at least get back to the GP, but I'm just so tired of it all: scans, poking, prodding, losing my composure in front of doctors and feeling like a pathetic idiot, being talked down to by said medics and being told twenty different things. I just have nothing left at the moment so kind of burying my head in sand.

I'm knocking on, definitely the wrong side of 35, ok I'm 39 next birthday and in the last few days been thinking maybe next month is time to restart the madness. Or, should I wait for Coventry results another month gone? Or 3rd option, wait until January and put back a frozen embryo from my original successful cycle in 2013 (I've started process to do a FET, NHS busy clinic but self-paying so a bit of a wait).

WWYD? Conceive naturally and try the new treatment plan recommended by RM NHS specialist (clexane and progesterone). If I sound flippant about conceiving, I've gone from 2 years of not one positive pg test, cue 1 round IVF and then 3 natural conceptions, literally one well-timed shag (poor husband) and pregnant that month.

According to Coventry Professor, having IVF embryo is not worthwhile as "it's the soil, not the seed" (genetic testing came back "normal female result", thanks for telling me the sex, devastating as gave loss identity). Anyway, don't even know if I have the NK cells. Can't face Shehata. Do I try one more time naturally before using embryo as last attempt (can't take much more).

Any advice gratefully received. Sorry for this long winded stream of consciousness. I could go on and on about due dates coinciding with the births of friends' babies, not being able to think about anything else, oscillating between thoughts of just giving up now then berating myself for wanting to stop.

Anyone?

Hi Lost I Completely understand where you are coming from - I too am waiting for my Coventry results have another 2 weeks to go. They asked me not to get pregnant before the results incase I have to go back for another biopsy. This means I miss out on another month of trying ( we have already missed 5 due to the nhs tests). Like you I seem to be able to get pregnant straight away but can't keep baby past 12 was - I also have a lovely 2.5 yr old. I really want to sod it and use the progesterone that Coventry gave me and get on with it but as my husband pointed out its better to wait one more month In case it turns out I have high NK cells and need pred. Protocol. So my plan is to start again in Nov once I know what Coventry advise. I don't have my nhs results yet. Having made this plan in my head is making me feel more emotionally stable. Can't tell you what to do as only you know what is right for you but keep talking we are always happy to listen. I like to know how you get on as your story is similar to mine although I am a little older Alas 🙂Good luck

Hey Dan,
Great to hear from you. I thought I had killed the thread.
I've been thinking of nothing else and have decided to also see what happens with my Coventry results. I was similarly advised to wait in case I need another biopsy. But I found it fairly awful, so will probably not do the 4 hour round trip for that particular pleasure.
I think I will use the frozen embryo we have. It will always play on my mind otherwise. I have 2 more goes at baby number 2. Five miscarriages will be the tipping point when I give up. I expect the clinic will fit us in early 2017. I have been pregnant for the last three Christmases so will actually enjoy a glass of fizz or six this year.
I would be interested to hear what Coventry advise you. Happy to pm if easier.
Take care.

Hello - yes I am hoping I won't be asked to go back for another biopsy. I know what you mean It's hard as it is constantly on your mind and it seems the moment you loose a baby or are trying again ( or endlessly waiting to be able to try again) we are surrounded by other people having babies without a problem. My husbands friend is visiting next weekend who we haven't seen for 3 years and his wife is pregnant and due the same time one of my lost babies would have been ( not sure how I'm gonna cope with that evening - plenty of wine I think!) i am glad that you have a good embryo available so you are not just having to rely on catching a good egg. If you can get booked in for early 2017 will make Christmas more fun as you will have a plan in place and hopefully a baby to look forward to.
I also set my self a no more than 5 losses rule - as the emotional and physical toll is awful - do you keep getting tearful for no reason? Although in reality I suspect I will keep going until I am no longer producing eggs.
Are you taking any Vitamins/supplements other than Pregnicare? Will definitely let you know what Coventry say. Keep in touch and stay positive X