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?

hello, no, haven't booked Coventry yet as it needs to be booked when you are ovulating and i will wait for one AF first...

baking wow 30w, that is great...

I so know about future events. didn't sign up for a run i did last year as i thought i would be pregnant. won't train for a 10k (as i usually do 5k) as i might be pregnant, etc etc

baking yes, the utrogestan is capsules 100g that can be taken orally or as pessaries. I was told 1 each way 3 times a day. Re IVIG, it does say NK cell tests recommended, so she must have listed it as a potential treatment if that shows anything. Glad to hear you are doing well and you are being well looked after - you deserve it after all the heartache.
tiny I had around a 5 month break after MC2 while doing investigations, which was good to recover. Been TTC again since August though, which is why it's frustrating that nothing yet has happened (except the chemical). With me it's more the impatience and willing it to happen, rather than the not planning bit that's frustrating. And feeling like I want to do all I can but there are no guarantees...

baking do you know boy or girl?

silverine My scan went really well, thanks for asking! Been given the 9th October as EDD now...

I have heard lots of positive things about acupuncture, however, it really depends on your therapist. I did it for my migraines many years ago, and had phenomenal success.
I also considered it after my third mc, when I was starting ttc again, and I went to see an acupuncturist for a consultation. I didn't go with it in the end because I didn't agree with her treatment plan, and she also seemed to really fixate on me becoming pregnant - which I do not have any problems with, it's the staying pregnant that's the issue...

Have you thought about reflexology? It is fab! And may reflexologists also specialise on fertility/pregnancy/mc issues, so maybe this is something to think about? I had reflexology while pg with DS, and it was just heavenly (but I have to admit that I love foot massages, which is not everyone's thing...). Sadly, I now can't have it due to a DVT a few years ago, sniff.

Did your consultant say why they wouldn't prescribe the progesterone? Could you get a second opinion? I know it's tempting (believe me, I have been there, too), but please please be careful with self-medicating, even with seemingly 'harmless' drugs (there is no such thing). Better find a doctor who will listen to all your concerns and work with you to come up with a plan. I know it's hard when you hear how everyone else is medicated up to the hilt, but everyone is different. I'd go with the alternative approaches like acupuncture and reflexology etc. first, you can really be proactive with those.

baking can't believe you are 30 weeks now! I'm always surprised at how quickly other people's pregnancies progress
I haven't been on this thread for a while but I just wanted to update. I had my final gynae clinic appointment today and all rmc tests came back normal. I'm now 17 weeks pregnant and according to the doctors everything looks good. The major difference time was I took metformin for 6 months and this helped ovulation and cycle length.

baking amazing news!! Can I ask whether there was any pattern in your mc? Just thinking that prof q recommended pred. upon bfp to you. In my case the pregnancies were pretty much doomed at the time of bfp,v. low hcg and natural mc at 5/6 weeks. I wonder if in such scenarios pred at bfp would have made a diff. I know Mr. S. does give it from post ov, probably for more severe cases.

silverline I don't know much about the progesterone you have been given. It took be 8months after mc#1 to conceive again and I was seeing a fertility clinic on the 8th cycle. They gave me crinone (progesterone vaginal gel) to take from ovulation. That made little difference to changing the course of mc#2. But if course it is worth a try.

tiny me too, I am waiting for my first bleed and will then book with prof q. Only thing is I wonder if my cycle will return to normal so quickly that I can predict ovulation and set up appointment accordingly.

We are waiting for dna frag test for dh. We think that could hold the answers to my mcs. Lets see.

Hi triple all my MC were 8-10 weeks, though when I was having early scans it was obviously going wrong earlier than that (slow growth, weak heartbeat etc) A lot of the women on the pred thread are prescribed it whilst TTC or from ovulation.

silverine we think baby is a girl based on 20 week scan.

Hi JBrd the councultant I saw abroad was one of the best in the country so i have no qualms about following her instructions about the progesterone. The only difference is that I did not see her in person for the follow-up appointment, so I just had some extra questions to understand the hows and the whys in myself. Once my day 21 progesterone results come out I will get in touch again to clarify.

When taking it from ovulation though, is that stilll as a pessary? Does it not interfere with semen etc when TTC? sorry if stupid question!

baking a girl!! How lovely!

P.S. the consultant here also said progesterone might help but could not prescribe it because of the guidelines on the Promise study...

I don't know if anyone will connect with this the way I did, but I thought I'd share it. I've always loved Frida Kahlo's work, but never knew much about her.
Frida Kahlo article

silverine I took it from 7 days post ov (around the time any embryo is implanting) I think it would not be good whilst TTC, though you can insert them rectally if that's the protocol and you think it's an issue.

Hi I've not posted in a while, been angry, upset and trying to come to terms with everything.
I have had 3mc in 10 months, 6,9 and7wks
I have appt with gynae on April 9th and have had routine blood tests ordered by the GP, but can't remember what they are apart from diabetes and thyroid.
I live in Norfolk and a quick google doesn't show the best information in my area. If I want to go private and have the NK tests how do I go about it? Should I wait til I see the gynae in April? It's all confusing to me and like another language trying to follow all the treatments everyone is on.
I'm feeling quite lost.

in advance

Sorry you are struggling halfbaked I think I'd be inclined to wait and see what comes of your gynae appointment, it may give you the answers you need. If not, then you can go to either Coventry or London for NK testing. I saw Prof Quenby in Coventry, she and Prof Brosens run an implantation clinic to which you can self-refer. You need to be using contraception and monitoring ovulation and you go 7-10 days post ov for a consultation, scan and a uterine biopsy and 'scratch'. The biopsy is checked for NK cells and for how the cells grow in the lab ( to do with progesterone levels ) the scratch is supposed to stimulate an improvement in lining for the next few cycles. They phone with results a few weeks later and give you a written treatment plan. Costs £360.
In London the Drs who investigate NK cells are Dr Shehata & Dr Gorgy. AFAIK they only test peripheral blood for NK cells, there seemed to be some controversy over whether that correlates to levels in the uterus. They do a much wider range of immune tests, the work in Coventry is closely linked to their ongoing research projects. They also use a much wider ( more controversial?) range of treatments, including intralipids, IVIG, hydroxy. If you want to know more find the "TTC or pregnant on pred" thread on the conception boards, lots of the women there attend the London clinics. My impression from the thread is if you go to them they'll want you to have all future treatment with them, whereas Coventry is a one stop shop and they'll send you back to local RMC clinic for follow up.
We didn't have the £££, time for repeated trips or emotional energy to go the London route. We'd made the decision that if Prof Q couldn't help that was the end of our particular road. Luckily she could.

Thank you bakingtins that's really useful.

I think Coventry and Prof Q sounds like the way I'll go if we don't get any answers from gynae.

Time to do a bit of research I think.

Hi everyone, last pee test this weekend and I am so unbelievably excited about that All my tests have been fine so consultant has just recommended high dose folic acid for if and when I TTC and scan at 7 and 9 weeks if I get BFP, that's it!quite scary to jump back in but I think I am going to wait a while baking 30 weeks how exciting!

Greetings, unhappily joining the gang... had 3 miscarriages in the last year - 9wks (ended about 6wks), 12wks (ended about 9wks) and most recently 6wks. Feeling exceptionally grateful to already have 2 marvellous DC.

I have a doctors appointment in the morning to find out what I can expect next. This is a follow on appointment from the GPs appt from the last 6wk miscarriage where I was able to take 'stuff' to pathology and had a referral for a structural scan' and can go for some blood tests. (Day 1 of cycle Coded: CS, F, HX, PROL, TESTO, TSH, Coag screen, FBC,LH,FSH,Prolactin, Testosterone, TSH and also Progesterone on Day21) I haven't had the blood tests yet but the GP said it was fine to take the 21 day test 21 days after my miscarriage and the the other test on Day on of my first cycle. (My cycle came back pretty spot on last time so I am hopeful it will again).

I came away from the appt grateful that the doctor was taking some action but on reflection I am not clear on what I can expect in terms of a referral or even if there is anywhere in my region to be referred to; I 'think' they will try to do genetic analysis on the 'stuff' but even that I am not certain of as it was all a bit stressful and obviously unplanned. I didn't attend the EPU as I started miscarrying at 5wks+5 although I miscarried at exactly 6wks so I haven't seen anyone other than the GP.

Has anyone got any advice about what questions I should ask and what I should be making sure that I am offered.

Just made myself even more sad by reading statistics on likelihood of it happening again...

Somehow you never expect these things to happen to yourself, but clearly here I am...

Morning Happy, sorry you find yourself here. Sound like your gp is proactive and on the ball, which is great. For your appointment, I'd write down any questions and take them with you, and also get the clinic secretary/admin's email so you can ask any you forget or think of later. Which clinic are you going to? Lots of ladies on here have been to various clinics so do scroll down to see what our experiences have been, might give you ideas to ask about. Good luck.

Hi Happy none of us want to be here but the support is fantastic. I don't know anyone IRL who has had multiple miscarriages, I would have been even more lost with it all without Mumsnet.
First thing is that the day 21 test needs to be 7 days post ov, which might not be day 21 post MC, so unless you are tracking ovulation this time and get straight back to day 14 ish (and have a 4 week cycle anyway) it's going to be difficult to interpret, so I'd query that.
I don't understand all of the codes on your list but it looks like you have the standard hormones, follicle stimulating hormone, luteinising hormone, prolactin, testosterone. TSH is thyroid stimulating hormone. FBC is full blood count. Coag screen is coagulation (clotting). Quite a lot of your list seems to appear twice.
There doesn't appear to be any of the tests for autoantibodies but it might be bundled into 'clotting'
Your GP seems pretty on the ball, but I think you should expect a referral both for the scan and for someone with RMC experience to interpret the results. There's normally a clinic as part of the gynae department at big hospitals, probably the same place as your EPU?
I hope you get some answers from the process, it makes the losses easier to come to terms with if you understand why they happened and it's easier to try again if there is something concrete you can do to improve your chances.
Things are a bit quiet on the thread because we've had a lot of recent graduates to pregnancy, so there is hope even after 3,4 or many miscarriages.
Mary Regan's book "What every woman should know about miscarriage" is a good explanation of what they are looking for.
Good luck, let us know how you get on.

Sorry, wanted to add that your list doesn't mention karyotyping for you both (genetic testing). it's unlikely there's an issue given you already have children but it is part of the standard testing and it takes 8 weeks for results so you want to get on with that one.

Hi Happy sorry you're here with us. I'm glad you have a proactive GP though.

Baking, weirdly I have two work colleagues who have RMC issues! One has a septate uterus and the other has APS. Both have successfully carried recently and fill me with jealousy hope!

Thank you to all you lovely ladies for the replies, think I was beginning to get a bit anxious about the appointment, silly really as it was only a GP appointment.

Baking - I wondered about whether the 21 day test would be ok if I didn't get it spot on... I think I am going to risk it anyway as although I am not tracking ovulation I am aware what the signs are and they seem to be appearing at the expected time. As for some of the list appearing twice quite probably - I just copied out all the codes!

However... I am very glad I saw the doctor and queried about referral as I have now been referred - had to ask why I couldn't be referred now as all the GP tests are in the next couple of weeks and the waiting time is expected to be about 2 months. (As suggested it seems it will be at the hospital where the EPU is and gynae related).

I think any questions that I have about more specialist testing - antibodies, karyotyping are just going to have to wait until I get to the referral appointment. GP was more than happy to go through what all the blood tests were for though.

I have told a few select friends so I do have some support and my MIL is aware too although I haven't discussed it at length with her. I know a fair few people who have had miscarriages, but as far as I know only 1 who could be classed as a RMC and oddly I haven't told her. It is definitely helpful to be able to feel that there are others who understand here, so thank you to you all.

DH came with me this morning and have a feeling that he feels a bit more involved now and also more aware of what the future might hold.

tannyLoo/Just - I don't think my GP could have not been proactive faced with me! Glad I chased up for referral though.

Hello all, just saying hello and welcome everybody as there is nothing to announce yet. still waiting for first AF post MC, then it will still be a case of waiting to ovulate to book my appointment.

Booked 4 day holiday in the Isle of Wight at the start of May so looking forward to that. needed something fun to hope for...

Hi ladies it's ages since I've been on so thought it was time I caught up! I browse the pg boards but never dare post anything! How are you all? I haven't read through the thread just the last page as im on my phone but I can see there's quite a few new ladies (unfortunately) sorry you all find yourselves here :(
Hi to the ones I recognise baking jbrd tanny tiny just purple sorry if I've left anyone out!

Well my update is im 26 weeks 5 days now and fingers crossed all seems to be going well :) had a growth scan yesterday which was fine the baby weighs 2lb 1oz and is footling breech at the moment! I still worry every second of every day I don't think I'll relax until the baby is in my arms but trying to enjoy it at the same time.

butterfly great to hear you are (both!) doing well A lot of the 'grads' from this thread post on 'pregnancy after miscarriage' if you want somewhere to chat. I still haven't joined an antenatal thread apart from that one. Someone on the pred thread said it's almost impossible to talk normally about your pregnancy after repeated losses you are always mentally adding a caveat "if it works out this time" on the end. I still feel like that and I only have 9 weeks to go....
My baby was transverse at 28 week scan but has since turned head down so don't worry about baby being breech, still plenty of time to turn round.

Butterfly it's lovely to hear from you. I can't imagine being where you are! xxx