Recurrent Miscarriage Support - tests, treatment, trying again - thread 9

[bakingtins]

Welcome everyone - pull up a chair! A thread for anyone who has suffered multiple miscarriages and is in need of information, moral support, tea or sympathy. Newbies very welcome.

Can we start the thread with a recap of where we are all up to again, please?

Amy, I've just done a little research and the law says mat leave starts after 24 weeks, and any time off is recorded as sick leave. However, this sick leave must be recorded separately from other sick records so that is does not have a detrimental effect on your employment record. I hope this helps. Don't rush back for them, take the time you need.

Thanks for updating, amy , I hope that helps you come to terms with the loss a little and forgive yourself. I was going to say the same as just re mat leave, but any sick leave after a MC is pregnancy related and can't be counted against you, so take what you need.
I don't think you've said what you've had tested so far from a RMC point of view. Are you waiting for more results to come back at the moment?

star I think being told you are normal is extremely frustrating. We all want answers to why we lost our LOs and something concrete that can be done to improve our chances. Statistically 'nothing found' is the outcome for about half of women tested and their chance of success in a subsequent pregnancy is 70%, which is not bad when it's only 85% in a first pregnancy. It was only when I lost a baby proven to be normal genetically that I started pursuing the immune issues. I think there is a lot still unknown about RMC, and since chromosome problems are common there is a subset of people who truly are just unlucky several times in a row. My gut said that wasn't me, when the cytogenetics supported that it was a spur to pursue other options.

Baking - thank you for details on what Prof Q is looking for. I may go see her after all.

Woohoo full term!! Fx for a smooth delivery

Thanks triple

star had a nosy at your other thread and that sounds more like it in terms of tests. You don't mention karyotyping which means blood from you and your partner being sent off for chromosome analysis. It takes 6-8 weeks to come back so worth getting on with it. AFAIK it's green and purple tubes (ended up taking DH's blood myself because his GP was rubbish - I'm a vet) and it's sent off to the States. My GP did do mine but not without much referring to the computer and discussion about which tubes were needed etc, it's not something they seem familiar with doing.
Other than that, look into seeing the Prof! I am biased since she sorted me out but I would rather spend that money and know as far as possible I'd covered the bases before trying again. You need to be 2 cycles post MC and 7-10 days post ov and not pregnant, but honestly there are benefits to having a few months off, getting your head straight and having a break from TTC.

Hope some beautiful weather lifts everyone's spirits this weekend. It's my ds2's 4th birthday party today - a Peter Pan party in the nearby woods run by his Forest School leader. He's Tinkerbell and I'm Smee, as the character with the biggest belly....Won't be any smaller after all the I spent last night icing!

I think karyotyping was last on my gynae list because of cost. This might be the case for quite a few of us.

I'm also really happy to be going to see Prof Q this month. The physical break from ttc has been needed, and emotionally I'm clearer that I'm near the end of trying. Will very much depend on results.

Wish me luck. This morning I'm off to talk to my mum about financially backing me to set up in business. We don't talk about money in our family.

Baking reaching term is wonderful news! Enjoy the

I wish I was on my computer! There's lots going on on this thread, but I can't hold it all in my head!

The karotyping tests won't be back for 6-8 weeks. These were preliminary results. I dont get sick leave pay only the social welfare illness benefit even though I have a very good job in a company I've been in 12 years so that's why I guess the dr was asking re mat leave.. At least I get paid for that. Small worry at the moment but I know I will end up going back too soon cause of stupid horrible money. It's all become very unreal for me it's a daze... I still feel pregnant I want to be so badly.. It's like last week hasn't happened and then I remember and it's pure panic... I'm prob not making much sense..sorry.

Hello Amy and Star. I'm glad you've joined this thread - though sorry that you're in the position where you've found it necessary.

I'm not able to help with advice around tests etc. I've had two MMC's and recently had my bloods tested (haven't had results) so not familiar with wider testing. But hopefully I can provide some moral support.

Hello all,

So I am trying to see if there is anyone who has been in a similar situation to me or may be able to advise !?!? I have now had 4 miscarriages 3 were of unknown location (although they suspect 1 of those may have been a small tubal miscarriage due to HCG behaviour) and the last one was April and was classified as Ectopic.

I am with St.Mary's and they have done initial investigations which they completed in March and I thought they would be of support when I got pregnant again but they just watched me have another miscarriage there was no plan in place no help what so ever and that really really does cut deep as I thought they would help.

I am due to see Dr.Shehata as a private patient in june but am concerned that his view is to look for auto immune disorders only (nCRs?!?)

No one has done an HSG yet but I have a sneaky feeling that I may have partially blocked tubes but nothing conclusive sad
Anyone been in the same boat and any advice on how to make a game plan from here ?!?!? Its pretty hard going emotionally and I was also thinking of Maya massage to help if there is any issue with the tubes.....

Hello Everyone.

JBrd, I think I feel that panic this time too. The questions have started as to why he doesn't have a sibling have started and I don't know what to say. Some days are calmer than others, but since the 3rd mc I really feel that panic burning in my chest.

Star, hello. Sorry for your losses. Have you been referred to an NHS recurrent clinic? My appt is on the 30th- so roughly 2 and a half month wait here. I went to see GP to plead for a sticky blood test- back neg. I also asked about asprin and steroids/ immune/ prof Q and getting them ahead of ttc in case- she answered there was no evidence to support this theory (?!?! really? someone should tell Prof Q!! ). I'm ttc this month and think will go see Prof Quenby after that if BFN anyway. Not heard of the hormone pess. Hope you get more tests offered.

Baking you are a wonderful source of information- going to copy and paste all that as for star and take along to the recurrent clinic in case I'm fobbed off. Thank you- and the party sounds magical!

Tanny I hope you're appointment goes well and you get some answers. And a new business sounds exciting. Wishing you all the funding you can handle!

Amy Sorry this has been the case for your little one. I'm glad you at least have an answer that proves there's nothing you could have done- and that you do get time off work to recover and start to heal in private at home.

Morning all!

moorthya welcome! Glad you decided to join us and hope some of the St Mary's ladies will be able to help you. I think you are right and you need HSG.

betty thanks for updating and good luck for your appointment.

Welcome, Moor, sorry for your losses and sorry you feel messed about by St Mary's. Maybe email your concerns/requests/queries to Yash, she's usually good at getting back to patients. After st Mary's, I went on to prof Quenby in Coventry as I felt that uterine biopsy was a better next step than more bloods. Good luck with your journey.

Hi Moorthya - sadly there is little even St Marys can do (bar tell you the odds) in the early stages of pregnancy.
Did you get the results back?
Did they offer you an early scan when pregnant?
Did they warn you not to get pregnant during the tests? I was warned about this repeatedly, it isn't on if they didn't clearly state how long these things take.

Email or phone Yash if you have concerns, as Baking says.

I had my tests spanning September to November last year: it is really tough but put simply they cannot do anything until these are completed. Unlike many places, if (only 505 of cases) they find a condition, they don't just give a standard dose aspirin they tailor it and hence their testing process is complex.
I'm afraid they cannot really treat you until after that time.

When I conceived after my APS diagnosis, I was given a letter/prescription for medication and fortnightly scans until 12 weeks. I believe they will scan you even if nothing is found (but of course won't give meds 'on spec' so this will purely be for reassurance).

At St Mary's nothing was found on my tests. I was normal...

On BFP I was offered another blood test at 5w in case I had something that only became noticeable in pregnancy.

then they scanned me at 6w, 8w and 10w and discharged me. that was a successful pregnancy but nothing was or could be done...

since then had 2 more mcs so will test for NK cells with Prof. Q

moorthya can you tell us a bit more about your "miscarriages of unknown location" ? Were you scanned in each pregnancy and nothing could be found, or is this a retrospective thing since you've had a confirmed ectopic? How was your ectopic treated? Did you have methotrexate/surgery or were you in the process of miscarrying anyway?

moorthya sorry to hear of your losses and that St Mary's have not looked after you in this pregnancy. Maybe going private is the best way forward. Incidentally I saw Mr S this week as well and have been diagnosed with very high NKC and awaiting results on a bunch of other tests. I hope you can get some answers the private route.

I would be interested to find out about PUL too, is it that you were scanned too early on? At what stages have your previous mc been?

tiny good luck with prof Q. Do tell me how it goes!

jbrd how is TTC coming along? I hope the scratch from prof Q helps you get upduffed quickly.

I have some news. Two pieces of news: I had my TEG test from Mr Rai today along with some other tests (factor v, mhtfr, aps) and my results on TEG were abnormal. Yay ! So now I have high nkc AND a clotting condition for which I will need heparin for 24weeks. And it gets better. When I saw Mr S, he thought my LH levels were a bit high and indicative of PCO/PCOS. Mr Rai mentioned same thing that a positive TEG is correlated with PCOS and my high AMH also indicates towards that.

Apparently since I am getting pregnant it is not an issue, but I will need to read up more. So from being "normal", I now have three potential issues and I am wondering now how I ever managed to hold my pg with DS!!

Also was told not to take aspirin as he said heparin and aspirin work in different ways. Does anyone know why?

Triple Mr Rai put me on both, and as far as I could gather one was for my blood (round my body) and the other for the formation and structure of placental tissue. So they do slightly different things. I have classic bog standard APS though, hence it's both.

Squiz, how are you? Been wondering how you're getting on.
Triple, good and proactive news, indeed!
I'm pleased to report that I don't have coeliac disease so I am now normal in yet another way

Just bruised as anything from the injections and 23 weeks - scan showed a girl.
Every day I am amazed that something as simple as an injection and an aspirin pill can make such a difference. This time 2 years ago I simply didn't know about such things.
:)

People out there in the blood-letting testing phase ... thinking of you! Such a scary time. Hope you get the help you need.

AW, so pleased for you . Fx my turn soon. x

squiz so pleased for you!! You will have so much fun shopping for girly clothes. It is always so great to hear of positive success stories. That is the only thing that makes me carry on with TTC.
I recall you had one molar pregnancy, but what about the other mcs - were they very early on?

jbrd congratulations on being totally normal!! Next pg you should think and act pg from get go as clearly there is nothing wrong and maybe you just need to catch a good egg!

Triple, I think you're confusing me and JBrd, but I appreciate your positivity nevertheless.

Aah yes sorry!! just the j is the only common thing. So silly of me!! I meant you of course given you have had all clear from prof Q already.

Triple yes the others were very normal 1st trimester losses. Apparently my placenta would have been clotty from the start without meds (but they're keeping me on till 32 weeks as of course we don't want to come off and find clots at a later date).

Aww Squiz that's lush! So pleased to hear you're progressing.

Just I'm on track to be normal too. What are your plans now?