Recurrent Miscarriage Support Thread - Thread 17 - Tests, treatment and trying again

[Flower29]

Information, support, hand holding, tea, sympathy and a hell of a lot of combined knowledge - all welcome as we try to make sense of the RMC roller coaster of tests, NHS admin, heart ache and (hopefully) happy endings!
Please start with a recap of your stats

I know! I am impatience personified so not ttc this month is a big mental hurdle. And in RL gp, consultant and friends think there is nothing to worry about. I expect the hormone, thyroid etc to come back normal (i temp and do opks) but I'm worried about light AF since erpc and lining, and it seems the Coventry scratch can help with that so that's really what this is all about for me. Did you manage to talk to your gp or anyone to help reassure you march?

Nurse at Psc (epu) said step away from the tests as well! And no hcg bloods. Basically nothing I can do. But she couldn't tell me whether the progesterone would totally hide any potential mc or just delay it. They have booked me in for early scan (yikes) but not til 8 wks.
Coincidentally, She is going to a lecture given by Prof brosens about super fertility this week!

8 weeks???
I would ask for a 6w one if you are waiting to start heparin after the scan...

Ah well I hope you feel reassured anyway. And as Tiny says, push for a 6w scan.

Where's the lecture? I want to go!

Thanks for your support ladies, I'll definately be making a point to them one way or another. I don't think they mean to be insensitive, they just need to think more.

march Ive done the same as you before, checking for that darkened line but I honestly think they cause unnecessary worry. I think even the same branded tests all differ slightly in that one strong positive on one will show a different strength on the other. In my first (blissfully naive) pregnancy I tested cb dig in the evening after 1/2 bottle of wine (didn't think I would be pg) which showed 2-3 wks but the next morning it was 3+ wks so this shows how much it could vary just from drinking. By my reckoning I was 5.5-6wks so if I'd tested 2-3 now I'd be worrying so much! Cb also state that their tests can be a week out so it's clearly not that accurate.
I've never temped but I imagine that could easily be inaccurate too due to many factors.
Why won't epu do bloods, is it just std procedure?

I know. I'd like to go to the lecture too!

Heparin still not agreed tiny. Awaiting call or email from consultant. If she agrees to prescribe it, i will get scan at 6 weeks as well. The 8wk one is just the standard reassurance one, but it feels like a lifetime away. Nobody I've spoken to was at all positive about me getting heparin prescribed without a clotting diagnosis,so might be on to a loser

March, email Prof Brosens and ask him to say at the lecture "and for March's nurse, do book her an early scan and give her some druuuuugs!"

march i think with all my pg's the test was lighter and darker at the beginning - including ds and those that got past the first few weeks. In my experience they never do b-hcg bloods, unless its a suspected ectopic. There's no medical value in it as they wouldn't be able to do anything if levels were dropping. Shame there's not enough funding for reassurance bloods...

Hi ladies - needed a couple of days out from mn to clear my head. Looks like things have been moving quickly and I will catch up properly later but just wanted to add to march - my gp did do hcg tests for me on the last one as I was so worried. So if you did feel this would help you through the early days, maybe you could ask your GP if they would do it, even if epu has said no.

As for me, well we found out on Saturday that the last mc was the result of trisomy22. Apparently usually this is a random occurance but for 1 in 200 can be due to a transaction. Feeling very lost at the moment with it all.

x

Flen you just got linked on the MA newsletter
well done!

Oh sun. It's hard to know what to say. I'm glad you got a result,as I think it's better to be armed with as much information as possible, but I don't know enough about genetics to know what that means. Have they offered karyotyping for you and your OH? Or any genetic counselling?

sun that is really tough. When do you get to talk it all through with someone?

march hang on in there, sounds like you are asking all the right questions. Will be a hard few days.

tiny hooray! Thanks for letting me know - I don't get the newsletter. What does it say?

Oh March hang in there - but please step away from the tests!!!! No good can come from keep doing tests.

Sun I'm so sorry

I'm still on half days - just for this week. So I decided be brave this afternoon and popped out to buy my friends baby shower present (the one I'm not going to) and I felt like my heart was breaking

I felt sick and I could feel my heart racing. Felt so sad. Wanted to be buying things for MY baby!!!!!

I got a smiley face yesterday on the Clearblue and felt so odd to not be trying.

Had dinner with family on Saturday and mentioned rmc appointment in couple of weeks. Sister didn't do much to boost my confidence in that she said if my tests were clear there wasn't much that could be done and that I'll probably get progesterone.

But she's my sister - has been an obs registrar and is now retraining as a GP. Felt she was quite dismissive and I worry now are all GP's going to be like this?????

Anyone else feel that no one really takes us seriously??

The waiting for this appointment, being at work when I should be home on maternity leave or preparing for maternity leave is fucking killing me.

But I actually feel like no one wants to listen?? Anyone else think that?

I don't get a MA newsletter either???

Sun Hugs. I hope you get a proper consultation to explain everything to you properly and piece the jigsaw together. It must be overwhelming just to have the different bits of info and no way of knowing how they fit together.

Brummie hugs too. Well done on buying the present. I am sorry your sister wasn't supportive. Personally, I think I have felt taken seriously. Having paid for a couple of things privately, when I got my nhs referral through I appreciated that the NHS were throwing their resources behind me - lots of blood tests, scans and potential procedures that cost £££ they wouldn't be spending if they didn't take us seriously. But ultimately we are facing the reality of a lack of knowledge. The causes of RMC are so varied it must make the research quite tricky. A nil result overall could mask the fact that something is a very effective treatment for people with a particular cause of miscarriage, but possibly even counter-productive for others. The frustrating part in this context is some doctors' lack of willingness to try things that aren't proven but there are some pro-active doctors and some trials.

At the end of the day, even if no cause is found, you are likely to be successful next time. It's very hard to believe, and it's definitely terrifying to think there might be a cause after all, which is why I would support your decision to wait and get tested for the things you can, but please try and take heart from the positive experiences on this thread. It really will be you one day.

Thanks lurker I think that's probably the right word. Frustration.

Feel like I'm waiting for everything at the moment and it's hitting me hard

One of the worst things about pregnancy loss can be the feeling of loneliness, that others don’t understand what you are going through and what it means in your life. That’s why reading others’ personal stories can sometimes make all the difference, and make you feel less alone. One example we’ve read recently is Flennie’s thoughtful and heartfelt blog entry on the topic of trying again – and again.

Hi all, just wanted to share my experience from my first consultant appointment today at the hospital.

They've taken blood to test for lupus anticoagulant and one other thing, again related to blood clotting. But the advice was very much to try again.

If we have a 3rd mc they would do the karyotype tests on us, but wouldn't test the foetus. The reasoning behind this is that a large percentage of mc's are due to an abnormal chromosome and not necessarily to do with either parent which only the karyotype tests would show.

He said he used to work with professor Quenby and was complimentary of her and her work. Said it was up to me if I wanted to go see her, but ultimately the best way to get pregnant at this stage is to keep trying.
I took a list of questions with me then didn't even look at my piece of paper... Durrrr

Think I'm still going to wait 2 cycles and see Prof Quenby. Both to give myself time to build strength, diet like hell and get that scratch.

Brummie well done for getting baby shower pressie. But sorry you didn't get more support from your sis. I did feel a bit dismissed from the moment I mentioned I'd had 2 miscarriages and not 3, but what Longest says also makes sense. Just so scared to try again.

Baking glad you got an apology and now have better contact arrangements.

Tanny hope you're getting through the last few weeks ok and haven't killed DP. Mines just about alive still, although he's tried to escape a few times.

Sorry not been keeping up very well with thread. Best wishes to the rest of you.

sun so sorry that T22 was the cause of your last mc. My 3rd was T22, and I was also told it was most likely a random occurrence. I don't recall the figures but it is a common cause of mc (one of the most common I think) and though yes in some cases it can be linked to a translocation, there is no reason to assume that this is your situation - even with your dh sperm analysis results.

The person who would be able to explain this all properly is a genetic counsellor. They don't necessarily need to do counselling as such - but they would certainly be able to explain what all your information really means and how it would affect any future pg, and if it would affect it at all.

I know you probably don't want practical suggestions right now, but have you and dh had karyotyping yourselves? That would give you some more answers in terms of the T22. My dp refuses which I find very difficult.

I totally understand why you feel overwhelmed - this is a really specialist area and its complex. I appreciate this may only be the way I feel, but a diagnosis of T22 was a reason for the loss and that helped me. My 4th was chromosomally normal which was hard to bear in a different way. The 5th I will never know as they couldn't get a result. The genetic counsellor stressed it was most likely to be a random event, and as my losses are so different I'm going with that. Sorry that's not necessarily helpful as its about me, but she did emphasise that T22 is usually random.

Take some tine for yourself if you can, and I hope you get an appointment with someone soon to discuss the results. In the meantime hugs and hand holding.

brummie just on bus..more later

Glad you had a positive consultant appointment jady and good news that he's on board with Prof quenby. Interesting what he said about karyotyping.

Well done brummie for getting the baby present. Must have been so hard. On the question of what your experiences have been, I think I have found people to be generally caring but a bit clueless and horribly busy. My consultant is not a specialist in mc and so she just seems to go with the standard stuff and was not complementary about anything new. I felt like they did the basics but they don't have time for continuing care. Can't really blame them. They need more staff, more money and more research!

Sorry for the meltdown earlier. I am resigned to seeing what happens now. Hopefully acupuncture on Thursday will calm me down a bit

Never apologise for being upset March we've all been there and are still there at moment

Thanks ladies. I had quite a long chat with the consultant who basically said that the chromosonal issue that caused the mc is likely to be a one off, but to be on the safe side we have had karyotyping done on myself and dh. She basically said up to us whether we try again now or wait for karyotyping results, but that even if karyotyping showed a translocation, the advice is just to try again, unless uou want to go down the route of ivf with pre genetic testing. Sooo.... We have taken the plunge and are back on the ttc wagon and praying it is fourth time lucky. x

Thanks bootles. Yes - the consultant did say t22 is one of the commonest causes of mc. She was pretty dismissive of the sperm analysis test so bit confused why that was tested but hey ho.

I know what you mean about it helping to know the cause (or that there is a known cause). I was dreading finding out but actually I feel a bit calmer that at least we know.

I do feel very confused as to what's next. We weren't offered any genetic counselling unless the karyotyping comes back showing a translocation. So for the moment we are head in sand and back on the ttc wagon, which is quite honestly terrifying me, but am just at a bit of a loss what else to do.

x

sun. I am glad you had a proper consultation with some positive news even if it is all frustraringly vague. Welcome back aboard the ttc merrygoround.