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)

Ok, so I just read the web chat with Prof Q, thinking I might ask gp about a referal....
I can only find info about uterine lining quality concerning fertility/ conception which isn't an issue for us
Anyone got any experiences of acupuncture or natural/ dietary treatments??
I'm not a 'lentil weaver' but willing to try anything!! I'm trying to 'eat clean' after this bottle of wine!

Welcome fraggle and sorry to hear about your losses.

cath, so sorry to hear that you mc'd again. I was really hoping this one would work out for you . A loss at 8 weeks is more consistent with implantation issues which prof quenby and brosens at Coventry specialise in, so perhaps it is worth seeing if they can help. They are just so supportive and lovely anyway and they may have suggestions for things to try even if it's not within their usual remit.

For both of you re coventry, You don't need a referral from your gp. It's self referral. You need to have 2 cycles after your last mc, then you do ovulation testing and when you get a positive you call the clinic and they will book you in 7 to 10 days later. Clinics are generally on Mondays and Fridays (i think just afternoons). The person you need to call is the admin Kerri. The details are included in the info sheet we created. It's a Google sheet linked on page 1 of this thread. It's just at the top of the stats.

Re acupuncture, I had it weekly from just after mc3 was diagnosed (she actually helped it along, as it was a missed one and medical management didn't work) until I was into the 2nd trimester of this pg, and I still have it monthly. She mostly works on my anxiety now, but at the start, as well as this, she really helped me get my cycle back on track, as it had extended to 32 to 40 days, and she got it back down to a very normal 28, which helped with the frustrating wait each month. I go to a community clinic, so it's a shorter appt and she treats 2 people at once (pops in and out of the room), but it makes it much more affordable, only 15 quid a session. It you Google 'acupuncture community clinic' and the name of your nearest big town or city you should hopefully find one near you. I would highly recommend it, even though i was a total sceptic beforehand.

Thank you March. Found the spreadsheet and links. X

Thanks @March again for help and advice. Best of luck with your pregnancy.
@Fraggle, are you going to go for it with Coventry? I'm going to use these 2 cycles to decide. We're the same age too.
Will keep checking in for updates and will hopefully find time to read the whole thread too
Thanks again xx

Hi Cath. I'm not sure what to do yet. We have a review metering at our clinic next week and we have two in the freezer. I'm desperate to crack on but also dreading it. I don't want to be made to wait three months before a FET though! I think the Coventry centre sounds amazing but nervous about tests and further delays. Although having a third MMC would be a terrible outcome.
What are you going to do? x

I should also have said that I think you can now (or soon) get a referral to prof q at Coventry through the tommy's centre, but i gather from what she said on the webchat that this wouldn't include the nk cells testing, so not sure what this would be, but would be worth finding out, as there could be other testing/treatment that might be more appropriate.

If either of you want to join our fb group then you'd be most welcome. Just pm me your name and a description of your pic and I'll add you x

Hi
I'm trying to catch up with the thread. I was looking for hope stories after 4 losses? Had most NHS tests with nothing found.

Thank you March. I'm not a user of FB I'm afraid, so not able to join.

Welcome shabooly and sorry for your losses. There is still hope. I know it's hard to carry on without a diagnosis when it keeps happening. Have you looked into any other testing?
I had 5mc and am now 34 weeks pg after being diagnosed with high uNK cells at the Coventry implantation clinic. I took steroids, heparin and progesterone for the first trimester. There are other options for testing/treatment as well as a number of medical trials that might be worth joining. What is your pattern of losses?

Hi Marchgirl. Thanks for your message, I really appreciate it. I'm so sorry for your losses too and I' absolutely thrilled to hear that youre now 34 weeks! Congratulations!! I havent looked at other testing no, can't really afford it to be honest. I had 2 losses before my healthy boy (now 3yrs) and another 2 after him. I tend to lose around the 8 week mark, 2 have had heartbeats and still gone on to loose. I think I'm too old for any of the trials. I think I'm almost resigned to the fact that i'm not likely to have another child but just can't quite face up to the prospect...

Hi shabooly. There are a number of referrals you can get on the nhs for further testing:

St Marys in London do a more comprehensive set of clotting tests and also look for uterine abnormalities and adhesions.

Mr Shehata in harley street (think he also has a clinic somewhere else in the south) is a specialist in immune issues and does a lot of private work, but you can also get an nhs referral to him, which includes a limited selection of the private tests (including basic blood NK cells testing, I believe)

I gather you can get a referral to prof quenby at the new tommy's centre in Coventry (not sure whether it's started yet though). I'm not sure what extra testing they do, and I gather it doesn't include their uNK testing, but she's a superstar of rmc and will do whatever she can for you.

You might want to consider the coventry implantation clinic as well (run by profs quenby and brosens). Your pattern of losses could be consistent with high uNK diagnosis as 8-12 weeks is around about the time the placenta takes over, which can be indicative of the problem they test for.
It is a self funded nhs research project (so you're only paying for the cost of the testing and research, rather than the larger private fees that some clinics charge) and costs 360 quid one off fee. I know it's still a lot of money, but I don't think I'd be here without them.

You said you think you might be too old, but how old are you, if you don't mind me asking? I'm now 38, but many of the women who were originally on here (now decamped to Facebook) are into their 40s. Of course you know it's harder the older you get, but it's not impossible, so don't write yourself off just yet!

Hi

I'm 29 OH is 36 And we have been ttc no 1 since September 2015....

I'm new to this board having just had my 4th early MC in a row, all my losses have been around 4-5 weeks but have happened 4 cycles in a row since stopping the pill in August. I am now having a break from ttc to have the tests done the epu gave me a list of blood tests to ask my gp for so those can be booked as soon as I get my period. I also have an appointment for the rmc in Southampton on 31st March and intend to see prof quenby in Coventry for nk cells when I'm ready cycle wise.

This sounds like a really supportive thread and very informative so hope you don't mind me joining in.

Xx

Hi Marchgirl
Thanks so much again for your message. Very useful information indeed. I will be taking your suggestions to my appointment with NHS consultant on Thurs this week (going to get results for chromosomes from last loss hopefully). The £360 does seem very worth it!
I turned 42 two weeks ago - it's so difficult. My chances are really v low but it would help me I think if I could get some answers. Thanks so much for the energy and time you have put into this thread and your replies to me, youre a superstar - you'll be too busy for it soon tho i guess!! X

Hi everyone, mind if I rejoin the thread? MC#3 confirmed at scan this morning, it's heartbreaking but not as bad as previous MC as "reassurance" scans showed this pg as being of uncertain viability since 18th Jan, so had plenty of time to prepare myself.

My stats are:
36 y/o, no DC, MC#1 Sept 14 @ 11 wks (no idea why), MC#2 Mar 15 @ 5 wks (chemical pregnancy), and MC#3 @ 11 wks (blighted ovum). I also had a termination when I was 18, I was young, stupid and about to go to uni. I'm not particularly proud of it but feel I will make a much better parent than I would of then.

I've already been seen at a RMC and had all the standard tests plus for thyroid antibodies bar the genetic ones, haven't found any good reasons for my MCs, I was about to be refered for infertility treatment but found out I was pregnant just before Xmas. My previous MCs have all happened naturally but am looking to have surgical management this time so we can have the tissue tested. Also I'm more than a bit fed up of being pregnant after almost a month of uncertainty.

The uncertainty of the last few weeks has given me a chance to think about the next steps. Aside from genetic tests for chromosome issues is there much more testing that can be done on the NHS? Also I'm not clear what use infertility treatment will be for us as I can get pg, I just can't keep hold of it.

Hi everyone

I am new to the thread- hope I can get added please?

My stats are:
39 years old, I have a healthy 4 year old boy from my first pregnancy which went swimmingly well (the "party" started afterwards)
ttc baby #2 took 15 months: first miscarriage at 20 weeks :(
ttc baby#3 took 1 months: second miscarriage at 9 weeks (after seeing heartbeat and taking 75mcg of aspirin daily)
Was seen as St Mary's, did all the blood clotting and autoimmune testing, all negative. Hysteroscopy was clear, 3D SIS scan was clean, ovarian reserve testing looked very good (have polycystic ovaries)
ttc baby #4: third miscarriage at 9 weeks. Saw heartbeat but the baby was always below the average growth line. Was taking Clexane and aspirin daily until I started bleeding - and never stopped :(

Got seen by endocrinologist in January this year and blood tests/thyroid U/S showed a severely compromised thyroid function, cause by some auto immune condition (possibly Hashimoto's but he wasn't convinced 100%)
Now on thyroxine daily....

Husband has told me he doesn't want to try again as there's something wrong and nobody seems to be able to find anything.... but we both feel like we're setting our selves for yet another failure (age is not on my side regarding chromosomic abnormalities)

So I am seeing Dr Shehata on the 22nd of Feb, to discuss my test results with him and see what he can do....

Glad that info was of some use shabooly. Just a word of caution, Depending on where you are, your local consultant may not be supportive of you trying some of these other treating/treatment options. Mine accused various clinics of 'selling snake oil'. So glad i didn't listen!! Other consultants are very supportive, so hopefully you have one of those. There are several ladies on the fb group who are early 40s. tanny had her baby bertie last year at the age of 42, so it's not game over yet.

Welcome jess and anna, sorry to read of your losses and so sorry to see you back here mimi

mimi, you've had an awful time waiting. I've vaguely been following on the pg after mc thread and really feel for you. The waiting is awful. If you've had all the clotting tests, a uterine scan and the thyroid testing then that's pretty much all they do on the nhs. Karyotyping on the embryo is a good idea as the protocol now is to only test the parents if the embryo shows an issue. I also went to my gp and asked for a few more basic tests (full blood count, blood glucose, thyroid, as the rmc refused to do it, and coeliac screen, hormone levels (was supposed to be day21 for progesterone but i think she was just humouring me, as she took it 4 days post mc)).
I'm not sure why they referred you to a fertility clinic is you're getting pg naturally, although I've heard this before. Most rmc specialists will tell you that ivf will not stop you mcing, in fact you're more likely to mc with ivf, so if you have no problems conceiving then this is rarely the answer. The only reason i can see to be referred to a fertility dept is if it's combined with the rmc unit. If you've exhausted the nhs testing then you might want to consider some of the other testing options. I mentioned some above.

jess, good luck for all the testing and your rmc appt. Sounds like you have a solid plan going forward. The waiting is the hard bit but hopefully it will help you build back up mentally x

anna, gosh, that sounds like a complex history. So glad you have a diagnosis now and it does sound like something that could have caused your problems. As shehata is the main immunes doc, he sounds like a good choice for you. There is another thread (or used to be) with lots of ladies who are under him. It's nicknamed 'the pred thread'. or there are several ladies on our fb group who are also under his care, if you wanted to speak to others about his treatment. I hope you get some answers from him

If any of you want to join our fb group (secret group), then pm me your fb name and a description of your pic and I'll add you. We have about 60 members now and it's hugely supportive

Hi Marchgirl
Thank you for your kind works and advice- it's such a shame that our circumstances have brought us here but such a great help to everyone that forums like this exist; not only for the information we share but also for invaluable support day to day.
I would very much like to be included in the private Facebook group - will try to figure out how to PM you from the Mumsnet app first

Hello. I've posted recently about my history etc. Could do with some thoughts please? Meeting with private fertility doc today as had IVF, got pregnant and MMC again at 8wks.
Spoke about all the stuff i know/have read. He is happy to offer progesterone and clexane for FET in March but wouldn't give steriods unless had blood tests which would cost £2000. To be fair my husband is a doc and we have him a really good grilling. He was very well read and involved in research. Thinking we will try again without the steriods but nervous!

Hi Marchgirl
yeah youre right he was reluctant about the other treatments/tests. Had results from tests on baby - found out she was a girl and had trisomy 22 . I wasnt expecting that. Its been a double edge sword really. Thanks so much for your messages, theyre really helpful. how do i do a private message?! X

fraggle, glad you've got the prog and clexane for next time. That's a really good plan for next time. The nk cells testing can be expensive if you go private. I'm sorry, I've forgotten how long ago your last mc was. Coventry implantation clinic might be an option for testing uNK if you've had 2 cycles (if it fitted in with your fet). It's only 360 and has the added benefit of the endometrial scratch (thickens/normalises the lining and may help implantation). Just a thought but I know you won't want to hold up your next cycle if it doesn't fit in. The docs at Coventry agree that it's not advisable to take steroids unless you have a diagnosed condition, so I think your consultant sounds sensibly cautious.

Shabooly. I always find it terribly hard to know what to say when someone gets results like that. I'm so sorry to hear your baby had a trisomy, but can completely understand how in some ways it's a positive that it was something you couldn't have changed. Do you find you fall pg easily? Part of the Coventry theory is that some people have hyperfertility, so their lining is too receptive and not selective enough, and therefore they can implant eggs that should have been rejected because they are non viable. I'm not sure if that relates to you or not, and I know you were worried about your age too, but it was just a thought.
To do a pm you just click on the triple dot at the bottom of the post.

Thanks March. Where does the endo scratch for into a cycle of IVF say? Do you have it done then wait again before trying? x

That's fit into. Should really joined FB but i hate it!

hi marchgirl
no i dont think i'd be hyperfertile - it takes me a while to get pregnant but an interesting theory thanks! X

Hi fraggle. I presume for ivf you would have it the month before the egg transfer as well. They do it around cd21/7dpo and then tell you to ttc the following cycle of you're not ivf, so I presume it's pretty much the same. The benefit lasts about 3 months.

Trying to stay positive about my plan, the waiting is the hardest bit! Marchgirl I have messaged you about the fb group as I feel a group like that will really help whilst I go through this and perhaps in time I'll be able to help other ladies on there xx