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)

That was just for the level 2 immunes BTW. I had the level 1 immunes over here, although the Athens lab does some of the level 1 immunes AFAIK

Hello bananafish I keep bumping into you with my queries re. NK testing and Chicago tests you are becoming my go to person I haven't read up on the links u gave me properly yet so the answers may be in there, but in the meantime - how did you manage to get the tests done in Athens? I'm still sort of testing the water as the more in depth I get with it all the more freaked out I feel. I'm only just beginning to get my head round the 3rd mc and I'm trying to take investigations cautiously. Bit scared of what the results might say.... But gathering info slowly. Thanks for ur help 👍🏻

Hi lucinda

You can get the tests done, but you’ll need to be under the care of a Dr to get any treatment for any immunes issues

My consultant prescribes immunes treatment empirically for implantation failure / miscarriage - I’m having IVF with him. He says he doesn’t find the Chicago tests enormously helpful because

a) peripheral blood doesn’t necessarily reflect what’s going on in the uterine environment

b) levels bounce up and down so much that he believes that testing, treating, retesting and then deciding whether to proceed with IVF / TTC on the basis of retesting results, doesn’t really help, because levels change anyway regardless of treatment

And he says the Chicago tests are really, really expensive for something that’s only a rough indication, when the immunes treatment he’d use would be pretty harmless in any case (he doesn’t use the scary drugs like Humira or IVIG like some of the immunes docs)

So we will be treating with prednisolone, intralipids, clexane, progesterone and aspirin when we next do an embryo transfer cycle

All that said, whilst he doesn’t rate the Chicago tests, after the ERPC I wanted to get some sense of if / where there might be issues just for my own peace of mind. So I sorted out the Athens bloods by myself - only fessed up to my Dr last week

I liaised with Locus Medicus in Athens, I got the bloods taken locally, got them shipped overnight to Athens, and am currently waiting for results. My consultant had never heard of the Athens lab and said he would be v interested to see the results!

Which should come through today

I’m in miscarriage limbo land, simultaneously pregnant and not pregnant. ERPC was 4 weeks ago, yet on Thu my hCG levels were as high as they were when I was nearly 5 weeks pregnant!! Went in for a repeat blood test today, just really really want my bloody body to un-pregnant itself. Dr scanned me to check for retained products (all fine), and histology showed no evidence of any molar pregnancy. So dunno WTF is going on. Apparently my body just really wants to hang on to being pregnant

Just to say that our doctor wouldn't and won't prescribe any drugs Clexane etc without having had the Chicargo tests done, so over a barrel for us!

Exactly! I know Dr Gorgy accepts the Athens tests but will generally make you do the Chicagos. Same for Mr Shehata and Dr Ndukwe. Prof Quenby doesn't believe in blood tests, only uterine NKcells. So many POV!

Good luck with the Chicago's results fraggle

Thank you fraggle .

Wow bananafish that is really interesting about arranging the Athens tests yourself. Sorry I'm new to this but can I or anyone contact the lab (?) in Athens and arrange for blood to be sent there for testing? How did you get in contact with them?

I'm looking for ways to get tested without travel because I'm living in a remote area of Scotland.

Hi lucinda. Just to add to the chicago test info that people have given you, Coventry is self referral and is a one off fee of £360. It's self funded nhs so you're just paying for the cost of the testing. For that, you visit once and have a consult with prof quenby or brosens where they discuss your history. They take a uterine biopsy and at the same time do an endometrial scratch, which helps renew and normalise the endometrium, the effect lasts about 3 months. They test the sample and results take anything from 3 to 6 weeks. You'll get an email with the results and a follow up phone consult with the profs to discuss it, then they email a treatment plan which you take to your local rmc consultant or gp to prescribe. They stoat prog from 7dpo for everyone, and if you have high uNK (>5%), then also pred. As someone said, they test only uNK and not blood NK. They feel this it's a more accurate indicator, but they also freely admit that things can change month to month. You have to be two months clear of your last mc then you call at ov time and they book you in 7 to 10 days later.

You might also want to consider the research project they are about to embark upon through the tommys centre, where they are testing for a lack of stem cells and treating with either a drug or the endo scratch. There was a lot in the press a few weeks ago about this new breakthrough re stem cells. Very exciting development.

Annie, so sorry the numbers aren't looking more positive. It's such a hard decision about when enough is enough. I would agree that making a decision when you're full of pg hormones is not great. See how you feel in a few weeks before you make a decision. I don't think you're too old. There are several women on our board who are in their 40s and still trying or recently had rainbow babies. I think tannylou had her little miracle bertie at 42 or 43 last year after 5mc. Big hug xx

Hi all, can I join you, please? I've just been through my third MC and it's hit me much harder than previous ones. I have DD who is four, and while I had a threatened MC at 7w with her, she clung on and arrived at 37w. But since then pregnancy has been one heartbreak after another - MC at 8w March 14, then MC twins at 8w in Aug 14 (after a reassurance scan at 7w), then had a stillbirth at 36w in May last year, having had on-off bleeding throughout the first trimester. This latest one was again at 8w - and again I'd had a scan at 7+ showing everything to be fine, despite some early bleeding.

My GP has referred me to recurrent MC clinic, even though my losses haven't been consecutive. I had lots of tests following DS's stillbirth, so I know a little bit already - I have a bicornuate uterus but no clotting problems (despite this, they recommended low-dose aspirin this time around, which did not help).

I'm feeling a little battered to be honest - part of me wants to protect myself from more heartbreak, but I'm far from being ready to admit that I'm done. DD certainly got her stubborn streak from me!

Chat I'm sure I remember you from the TTC buses last year. So sorry you've had such an awful time of it.

This thread isn't as busy as it used to be as a lot of people have migrated to a secret FB group. If you or anyone else wants to be invited then pm your real name and a description of your profile pic and I'll invite you.

Hi, I had a follow up appointment today at st marys following my 5th loss. To start with they opened the meeting with 'we didn't receive your baby' so no results from that have been done (I've since contacted the hospital I mc in to be given the same speal as my first loss about how they are running tests etc but haven't had results yet despite us tell them to send the baby to st marys and being assured this would happen). Ive been told they want to do a hysteroscopy to see if I have scaring that will be sorted out while doing the procedure. But they can't do it till August. (They did offer end of May but I'm having half my thyroid removed then) does anyone know if we can go private to have it done so it's done sooner. I will have to go on the pill till its done and the pill makes me depressed and I'm already struggling, so want to be on it for as short a period as possible. Also can anyone advise me on where to go for NK cell testing? And how much it will set us back?

Coventry is the place for uNK testing - it's £360 I think.

Waiting ages for a hysteroscopy seems normal - my wait is at least 3 months

Thank you carrotVan. That's really helpful to know about the uNK testing.

As for the hysteroscopy I find it odd they can off it end of May but then can't help me till August. Sorry just feel as though everything has gone wrong and am hurting today.

Thanks Carrot. Yes I was on the buses last year, I fell off mostly due to superstition as ridiculous as it sounds. That and I was working and didn't have as much free time to mess around on mumsnet!

Help?! Info?! Needed please?! Feel totally stressed out! Just back from the fertility clinic and our blood results are not good! Killer Cells 24.3 when should be 15. TH1/2 48.3 with a big HIGH label next to it. Our clinic are recommending four rounds of intravenous intralipid. Down regulation with buserelin. Then steroids for 12 weeks, clexane for the whole pregnancy with progesterone and aspirin!
They are also willing to go ahead on a normal FET with just the clexane, progesterone, aspirin and steroids without the down regulation. I'm favouring the latter. Also questioning if the blood results could be skewed as done six weeks post D&C. Or if i should ignore the about and go to Coventry to have an actual biopsy? Help? I don't want to be full of drugs.

Thank you marchgirl for the info re. Coventry. That has really helped clear up a bit of confusion for me.

carot I will pm u with details to join the fab group if that's ok?

I've joined Facebook CarrotVan. How do i PM you to join the group and what details do you need please?

Sorry to be late getting back to you. I've been mad busy with DS1's birthday party. On this post you'll see a "message poster" click on that and send me your real name and what your profile pic is of and I'll find you and add you. Depending on your FB settings I might need to send you a friend request first

PM sent, Carrot. Hope the party went well :)

Hi, may I join you? Or the fb group if someone can pm me the link?

I'm 36, had one mmc at 12 weeks, then had DS, then have since had two very early MCs at 5 weeks and found out at 8 week scan yesterday there is no longer a heartbeat and the embryo has shrunk.

I have been offered an MVA procedure - has anyone got experience of this? It sounds like a very sensible path to take to avoid medical management and a general anaesthetic and for them to definitely get samples but it also sounds very painful. I want to know the pros and cons from someone who has experienced it before I make up my mind next week when I go back in.

Hi all,
I'm new to Mumsnet so please let me know if I'm posting in the wrong place! We've been ttc #1 since Nov '14 and since then I've had 3 miscarriages. Have had loads of testing and all clear except uterine killer cells which came back high at 16%. Am now 4 weeks pregnant again and have been taking 20mg prednisolone and 40mg cloxane since getting bfp at 10dpo. Anxious and excited in equal measure, anyone else in or been in similar position? Nice to have a place to talk about, suspect I may be driving husband a little crazy! :-)

Sorry to see new faces on here, it really is such a horrible time but I learnt some great things on here specifically the Coventry implantation clinic. I'd had three miscarriages and following ivf and the Coventry protocol I'm now almost 37 weeks pregnant so just wanted to say don't lose hope. Also just jumping on to say congrats to march so glad you little one has arrived safely xx

Hi all,

I created a thread earlier this evening as I'm a bit of a newbie and didn't realise this was here. I hope this is the right place to ask my question. I'm currently experiencing early m/c number 4 and wondering if someone can educate me on where I should be asking for a referral to and what I should be expecting/asking for once there. I'm trying to read the Dr Beer book but finding it a little impenetrable, so any simplified explanations of any aspects of reproductive immunology would be greatly appreciated! As well as any recommendations for clinics. I'm based in north west England but willing to travel if need be. Thanks!

Hi,

I am new here...have a four year old daughter, but have had three losses since...first loss at 6 weeks in September 2013, second loss at 10 weeks in April 2014 and it taking ten months before the miscarriage was complete, and third loss at nearly 20 weeks ten days before Christmas last year. To say it has been a harrowing time is putting it lightly...has anyone else experienced something similar? I have been to st Mary's today for tests and was wondering if anyone had a list of the tests they do there, as I forgot to ask as was too emotional at the appointment. I have also paid for natural killer/level two testing At Care and get the results of those on 20th May.

So sorry to see so many ladies on this thread and saddened to read so many sad stories. Thinking of all the little angels in the sky xx

Hi JOMH1982

I am very sorry to read your story, I just thought I'd drop you a note for support to add that you're not alone and that we have very similar stories, only in reverse....
I have a DS who's now 4.5 years old- such a lucky miracle really, as he was naturally conceived and delivered without any problems.

I have since had 3 mc's, one at 20 weeks (missed, found out during the anomaly scan), followed immediately by a 9.5 week one (only spontaneous one I've had) and last Nov' I had the third one, missed, at 8.5 weeks,. The last one was after being tested/treated at St Mary's for all the usual blood clotting/womb physiology/basic auto immune conditions they check women for.

The only lead I've gotten from St Mary's testing is that I have high thyroid antibodies- have recently been diagnosed privately with Hashimoto's and sub-clinical hypothyroidism so being treated for that.

I would strongly recommend considering going to Coventry as a first point of checking for NK cells.... I've been seen there in March and have also been going to Dr S in parallel. (there is also a separate thread nicknamed "the pred thread" for S's patients)

I suppose you are being seen at St Mary's in London? There is a document pinned in the first page of this thread which explains what each hospital does in terms of testing- may be helpful to read before you make any decisions.

I am truly sorry for your losses, it's really sad and unfair. Hope you find some answers soon xx

Bluebell - you can be referred to your local major hospital with a recurrent miscarriage clinic. St Mary's Manchester has one and I think Liverpool Women's does. Or you can self-refer to Coventry (www2.warwick.ac.uk/fac/med/research/tsm/bru/) which costs £360

There are also some clinics in London (St Mary's London, Shehata) which are specialists.

If anyone wants to join the FB group then message me with your real name and a description of your FB photo and I'll send you a friend request so I can add you. It's a secret group so won't show up on your wall/timeline and by invite only