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Miscarriage/pregnancy loss

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Recurrent Miscarriage Support Thread 16 - tests, treatment and trying again

986 replies

Justonemoretime · 18/01/2015 07:46

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 :)

OP posts:
bythesea82 · 29/01/2015 07:56

Thanks.
just no treatment plan, just a better helping of luck. Would be nice to feel I was doing something different but last mc was chromosomal problems, all other tests clear so just hoping......

Sunandrainbow · 29/01/2015 07:59

bythesea - that's fab news. Deep breathes. Heres to a new start and a happy healthy 9 months. Smile

tannyLoo · 29/01/2015 08:17

bythesea whispered congratulations. Lovely news. x

bootles · 29/01/2015 08:18

by the sea good news! Deep breaths...

Flower29 · 29/01/2015 08:28

bythesea Smile that's brilliant! How many dpo are you out of interest? Are you testing again in a couple of days?
bootles sorry you're feeling down, try and be kind to yourself. Could you treat yourself to a massage or something to try and help you relax?
baking still thinking of you both and little Faith

Flen · 29/01/2015 08:37

bythesea YAAAAAAAAAAAAAY!!!

bakingtins · 29/01/2015 08:53

bythesea fab news. One day at a time.....

bootles sorry you are struggling. I second the suggestion that you do something lovely to cheer yourself up.

Faith is doing ok, we've had one week seizure free but she is horrible on the meds. Permanently starving, doesn't sleep, grizzly ratcheting up to full on screaming if you take her boob away for a millisecond. I want my baby back Sad
She has an EEG tomorrow, if it is normalising we can start to wean off the meds. Then MRI on Tuesday ( for which she has to be starved, God help us)

Marchgirl · 29/01/2015 08:59

baking, glad to hear she had been seizure free this week, this had to be good news even though it had been so very difficult for all of you. Fingers crossed the eeg will have normalised so you can start to wean her off the meds. Take care of yourselves x

Marchgirl · 29/01/2015 09:02

cloud, how did your appt with the consultant go?

bythesea82 · 29/01/2015 09:08

baking pleased that Faith has been seizure free for a week but sorry that she (and you guys) are having to deal with the meds. Good luck for tomorrow & even more for the starving and MRI! Really hope that you can start to drop the meds and get your little girl back. Sending big hugs x

bootles sorry I just jumped in in panic this morning. Hope you are doing ok. Def do something nice for yourself, it's so hard when anxiety is just eating you up Flowers

flower no idea DPO, have never tracked ov. For me, I thought it would lead to madness! Cycle normally 28ish days but 23 last month. So cycle day 28 today. Will test again over the weekend I think.

ourdaywillcome1983 · 29/01/2015 09:29

Thanks ladies :) :) :)

sun and brummie my consultant agreed progesterone in the appointment and wrote a 'shared care' form for my file so when i got my bfp i called epu and they prescribed it from the hosp pharmacy, they then gave me a copy of my shared care form to take to my GP so they could continue the prescription. With the fragmin i had negative tests for clotting (although im not sure if they actually test for Hughes syndrome) so this was agreed after my appointment. With this i had to go i for a 6 week scan, they then showed me what to do, weighed me (to check dosage) and then i got it again from the hosp pharmacy with a shared care form for my GP to carry on prescribing.

bythesea wooooooohoooooo!!!!!! Try and relax and i have also found the 'this is a new pregnancy' chant to help in my panicky moments.

baking good luck tomorrow.

longestlurkerever · 29/01/2015 09:31

Great news bythesea! This pregnancy happened quicker than my mc ones too and I had no different treatment either. I hope it means something hormonal has adjusted itself for the better.

Hugs to you baking and everything crossed for the eeg.

Monten · 29/01/2015 10:19

Wow bythesea, massive congrats! That is great. This is a new pregnancy, the past does not define the future etc. I cant remember your full history but if the last loss was chromosomal then that was ‘bad luck’ and you start this pregnancy with the same odds as everyone else. I’m sorry you’re feeling shitty

bootles. I think you also alluded to other things going on in your life. I’m with you on that one. Sometimes I just feel like throwing in the towel completely and running away to some far flung destination to become a yoga teacher or run horse riding holidays or some other adventurous existence. I have form for turning my life completely upside down when I’m stressed so trying to hold my nerve!

Someone asked about karyotyping. I think what cloud says is true – it’s extremely unlikely to have a genetic issue with you or DP that is causing problems, most chromosomal miscarriages are random mutations. So karyotype testing of the fetus can be really useful (in providing a ‘reason’) but karyotyping of you and your partner is less likely to provide answers.

just what you said about three random chromosomal abnormalities being extremely extremely unlikely – is that true? I’ve had two chromosomal abnormalities in a row so I hope you’re right! But I thought chromosomes accounted for 70% of miscarriages, therefore wouldn’t three random in a row be more likely than some underlying cause? I’m really bad at understanding statistics and probabilities so I may be wrong!

I went to my GP the other day to discuss light periods and ask for infertility investigations to be started now it’s been 6 months. The GP was, quite literally, about 12 years old. She said basically just put on her best sympathetic face and said nothing but has referred me to the gynae department at hospital. Apparently they will see me and then decide whether to refer me straight to assisted conception unit ‘because of my age’. Really hope we get a bfp before then but glad the wheels are in motion in case I need them.

brummie really hope your first day back is okay.

baking really glad to hear no more seizures but that must be really tough on you and DH. Flowers for you.

Sorry if I’ve missed anyone else

longestlurkerever · 29/01/2015 11:02

On stats I think the odds of three in a row are low but then the odds of having a cause are low too. We are in the unlucky 1 percent either way. Chromodomal abnormailty risk is age dependent so the chance of having had three in a row are higher the older you are. 5 in a row with no underlying cause feels unlikely but some of those five could have been chromosomal.

Boozle80 · 29/01/2015 11:02

Bythesea wonderful news to log into. Congratulations!
Baking fingers crossed for med reduction soon for Faith, and your dd being returned to you happy and healthy

mrsdiddlydoo · 29/01/2015 13:15

Super news bythesea! Woohoo!

bakingtins · 29/01/2015 13:21

monten a lot of the medics we are dealing with seem to be twelve too. It's frustrating that because F's condition is rare they always end up escalating it to a consultant anyway, but we still have to go through the jho, sho, registrar first, waiting each time to see the next rung up and explaining it all again. It makes me feel really old when I realise I have a good 15 yrs on qualified doctors! I got a letter yesterday inviting me to my 5 yearly check for stroke, heart disease etc now I'm 40. Nooooo I can't go, I am too busy dealing with my baby to go for geriatric checks!

Floweroct · 29/01/2015 13:31

bythesea great news, fingers crossed!

baking hope the tests go ok

bootles sorry things are getting on top of you

Thanks so much for all your comments on tests etc I'm feeling better than yesterday and less like I'm going to explode. I had a bit of a melt down last night but think we've decided to go to coventry next month and by then we should have had other tests back. Still not sure on chromosomes so ill have a think about that.

God knows what I'd do without you all and your wise words! Thanks x

Jady77 · 29/01/2015 13:36

Second the good luck for 1st day back at work Brummie Try and take it easy. Can't remember what you do, but think my problem was managing my workload. Should have gone into planning mode and focused on pieces of work rather than trying to catch up on everything all in one go. Just got overwhelmed. So take it easy. I've been signed off another week then going to look at a phased return.

Congrats bythesea, hope you manage to relax a little over the coming weeks.

Bootle sorry your struggling right now. I can relate having had a rubbish week so far.

Baking hope you have a drug free, seizure free little girl back soon x

I'm in waiting for AF to come back mode, my last was 1st Sep, but determined not to TTC before hand this time. So weird though, last MC was 13th Oct and measured 6+1 on NYE so really ought to have had AF in Oct / Nov at some point. But only had a splurge 5th Dec when I would've been pregnant already. Cycle was a very regular 25days before Sep, going down the road of insanity looking at dates in my impatience Blush

Have been reading Prof Regans book, finding it really interesting. So much to take in though. Def getting that testing embryo is important and ruling out chromosome abnormalities which is necessary before looking at certain other possible causes. Higher chances of abnormal chromos the older you are. Chances of having another chromo abnormal Mc are lower than if previous Mc was normal chromo.

cloudjumper · 29/01/2015 13:37

Great news bythesea, congratulations! Hope the panic settles a bit soon...

monten I guess that is as good an outcome as you could hope for from your GP... No well-meaning, but useless comments, but instead a referral to see a specialist.

baking That sounds so tough! Steroid side-effects are nasty and relentless, hope you'll get a good outcome from the EEG tomorrow and can start to reduce them! Good luck xxx

The appointment with the consultant last night was quite good. Although I was a bit Hmm when we started talking and he admitted that he had no information about me whatsoever - I had somehow assumed that he would have my file there and done some reading/preparation... But on the other hand, it was good to go through all my history with him there and then, me and DH telling him all about the miscarriages (and the healthy birth of DS) and him asking very specific questions. He was very matter-of-fact, but friendly and kind, going through everything.
His bottom line was that, in spite of my age and my history, I still have about a 70% chance of a successful pregnancy, but agreed that time is not on my side here. He never referred to 'bad luck' when discussing the chromosomal abnormalities of the last 2 mcs, but it was almost as if he was taking them out of the equation when looking at my prospects and options (rightly saying that there is really nothing we can do to prevent this from happening).
Unexpectedly, he really focussed on my first 2 miscarriages, the ones that were not investigated and for which we don't know the reasons. He didn't agree that they most likely also were caused by chromosomal abnormalities. And he really honed in on the fact that I have a massive uterine fibroid - this was discovered when I was pg with DS, but did not cause any issues at the time, and I have been told repeatedly that it would not have any effect on a pregnancy, due to its position. However, they can cause mcs, and he suggested that I get an MRI done to look at this in more detail. He will write to my GP, so that a referral can be arranged.

So all in all, it was quite a positive experience - he did not give me the impression that I am barking up the wrong tree, trying to get pg at my age, but was very straightforward and proactive.
I feel glad that I met with him - and I take back my rant about DH, he was very much 'there', asking questions and contributing! And as an extra bonus, it won't cost as much as I originally thought, as they had sent me a quote that included a scan apparently.

So the plan of action will be to get the MRI of my fibroid - who knows... I am not completely convinced that it will provide many insights or answers, but it's something that has not been looked at before and definitely worth exploring (even if it's just to tick another box!). I didn't expect any eye-opening revelations, but it was worth getting another opinion and feedback from an expert.

Sorry for the essay!

Jady77 · 29/01/2015 13:55

Cloud glad you had a positive experience with consultant and DH's interaction. I'm always surprised by my DH cutting in to ask questions expecting myself to do all the talking. Gives me a flutterSmile

I just rang a hospital about taking part in TABLET trial and going in tomorrow morning presumably to test for the antibodies. All excited now!

Flower29 · 29/01/2015 13:57

Glad last night went ok cloud and you have a plan of action. Your consultant sounds like he was quite interested in your history and not dismissive of your mcs due to bad luck etc so I hope he can help.
baking hope you results are ok tomorrow so Faith can be weaned off the steroids. Hope you get your little girl back soon, bless her.

TinyTear · 29/01/2015 14:14

cloud hooray for a positive experience!

baking hope all continues improving with Faith! And ahhhh, I am 41 but haven't been called for old person's tests!!

longestlurkerever · 29/01/2015 14:51

That sounds good cloud. I hope the MRI comes through quickly. Is this something you could perhaps stretch to privately, if your consultation was cheaper than you thought? I think they start at about £200 but it depends on the grade of scan you need - could be as much as £600 I think. Just a thought as I know this is sometimes where the backlog can be and if time is of the essence it could be worth it.

Floweroct · 29/01/2015 15:57

That sounds positive cloud

So my positivity has taken a nose dive now I've noticed a colleague has a suspicious looking bump! She isn't married and has split up with partner a number of times - I know I shouldn't judge but it just seems unfair. I don't know her well so she just as equally could have issues I don't know about I'm just jealous! Bump looks about the size I should be too!