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?

I should have said I had all the tests the nhs offer and they all came back fine. I have recently been diagnosed with pcos god knows why they didn't pick that up before!

The other day dp said "when one door closes another one opens"........I found an abandoned bunny by the motorway today!!! not what he had in mind but it'll do!!xxx

The Lord works in mysterious ways.... hope he/she takes your mind off things!

Hello all, looking for some advice. I have had 2 MC (10 weeks or before) and a medical termination, I am 39, 40 in october. We get pregnant v. easily (so far). I have just had the results of the phase one tests for RM. All normal, except that my thyroid hormone is normal, but my thyroid stimulating hormone seems to be working overtime to keep it there (50% higher than normal). Consultant didn't think it was enough to cause RM, but recommended I see my GP as it was not her area. I have not been offered any more tests, and have been told that IVF with embryo selection was only recommended to couples with known genetic issues.

So, do I roll the dice again, or is there anything else I should do before - more tests, looking into IVF? All suggestions welcome, as I am sure between you you have been through pretty much all there is to be through.

Oh and if any of you think more tests would be useful, please advise where. I am based in london, but am happy to travel

Hi all

Sorry to read that a lot of you are having a particularly tough time at the moment. And that for cuppa and joker you are not getting the medical support you should.

Please don't blame yourself Wanttohope. It's difficult not to have regrets (I wonder whether we should have started TTC earlier) but they were the right decisions at the time.

I'm afraid I can't help you Aoife as I'm new to this myself.

I was hoping that someone could advise me re the progresterone. I started taking it in the week but I'm not sure when to do the pregancy test. I had a smiley face on day 15 so I guess I ovulated on day 16. So should I test on day 30? I didn't pay sufficient attention to the consultant but thought the instructions would be included.

It's relatively rare that I get a smiley face so I've automatically got my hopes up for this month even though I know I shouldn't.

I also tried acupuncture for the first time last week. I'm not sure that there will be much benefit but didn't see that there would be any harm. And it feels better to be a bit proactive. And also I made the most of her advice to go home and take it easy - I normally end up rushing around so putting my feet up in the afternoon (at least until I had to pick DD up from school) was quite a luxery!

forester my protocol was to take the progesterone day 21-28, then test, assuming a 28 day cycle, so I would test 14 DPO each cycle, or your best guess if you didn't get a smiley.

aoife welcome and I'm sorry to hear about your losses. I think I've posted with you on previous threads. Your TSH is supposed to be < 2 when TTC, so if it's high that needs to be addressed ( prob means you need supplemental thyroxine and it monitoring) Your thyroxine dose needs to be increased as soon as you get a BFP and levels monitored closely in pregnancy. Thyroid problems are linked to RM, I'm not sure it's as simple as "that's the cause of your losses" but it is certainly something that could be optimised to improve your chances. Have you both had karyotyping done as part of your initial tests? Have you spoken to a geneticist about whether the TFMR was due to a random problem or something you are at increased risk of? ( sorry for personal questions, you don't need to elaborate unless you want to) Were either of your other losses tested? It makes a big difference if you are losing normal embryos or if you've been unfortunate enough to have several chromosomal problems. Did you do anything different in that pregnancy that presumably got beyond 12 weeks?

Thanks Baking

Hi all. Hope everyone is ok.
Jokers-how's the bunny?!!!
Forester-I'm not sure re the progesterone protocol I just took it from a bfp but I would say if you test negative 14 days post ovulation stopping it would seem sensible.....

I'm ok thanks for asking bakingtins. Have my scan this week to see if I need a d and c :(. Realllllyyyyy want to avoid a another. I'm still in some sort of denial mode/it's all going to be ok since I was admitted. Maybe once the episode had ended (post d and c) I'll get out of survival mode and come crashing down.....gosh it's hard work

Hope everyone had good weekends
X

Hi baking, yes I have popped up here before. Gradually getting my head around ttc again. I will book appt with gp asap to get tsh sorted. It was over 5. Two mcs no tissue to test, one went down the u bend just before a d&c, the other despite grim times with a seive I could not find any tissue.
I had a med term at 12 for trisomy 21, this was spontaneous but every soft marker was abnormal and there was significant fluid around the brain. I did wonder if there was more than just the trisomy at play, but they only test for the most common chromosomal defects. I did nothing different that pregnancy. I do get pregant ridculously easily, and apparently the super fertility theory is gaining evidence. Given my age and history of trisomy, I have been told my best bet is to just keep trying. Not sure I can take many more mcs. I hope all is well with you.

Welcome Newbies. Hope you find the info and support you are looking for.

I'm actually starting to get a bit worried about my self. I said I was feeling hormonal last week and I have now finished my af but I can't seem to shake the anxious/almost tearful feeling. I don't feel 'sad' per se, but I don't feel 'right'. Don't know what to make of it, hope I snap out of it soon. Any ideas?

aoife quite a few of us have been told we might be hyperfertile. just posted a link to a paper about it on page 30 of the thread - worth a look.

just sending you (((HUGS))) and hope you feel better soon. It's a vulnerable time - hard to know whether to worry about getting pregnant/or not, or what happens once you are. Is there anything we can help with? Or can you find someone IRL to talk to?

Just, what baking said! I've had a proper meltdown for the last few months. Not sad but exhausted and fearful.
I hope you feel more like yourself soon. x

Good morning all - hope everyone is coping today... Sometimes you just have to take one day at a time!

Hi aoife And here we meet again... I've not read everything on the thread further up, but I hope that you're not struggling too much

I'm rather wobbly, too, at the moment, I think that my hormones are in the process of re-adjusting (at least that's my excuse).
We went to a birthday party on Saturday, all of our friends from DS's baby group (it was a joint b-day party for two of the little girls whose parents we met through the NCT), the majority now have their second one. It was a lovely party, and although I enjoyed it, I also found it really hard. I keep thinking, why can't I have another, just why?! The funny thing is that pretty much everyone from our group has also experienced at least one miscarriage when trying for their second, but apart from one (who is like me ramping them up and is on her third mc now), they all managed to have their babies without any complications afterwards.

So I'm bit all over the place right now... I do not know if I can face ttc again, but at the same time, it breaks my heart to think that I won't have another child.
So I blurted out to DH last night if he would ever consider adoption... And he would. I know it's too soon to think about this all, I need to recover first, we need to hear the results from the post-mortem etc., but my mind is wandering. Got sucked into that TV programme 'A family on my own' last week, which sparked this line of thought. I know nothing about adoption! I probably need a reality check first of all...

Hi jbrd it's v hard to deal with seeing other families having another baby when you are struggling. In my group of 7 NCT friends we have clocked up 8 miscarriages between 4 of us so any thought of trouble free pregnancy totally out the window!
We did look into adoption last year when I was at the point of giving up. It's certainly worth considering, the social worker I spoke to was not v encouraging about adoption into a family with birth children already, unless there was a big age gap, but I guess it depends on individual circumstances. The other thing to consider is they won't start the assessment process until you've ceased all fertility treatment or had a gap after a pregnancy loss of at least 12 months. Nothing to stop you looking into it for the future though. The mumsnet adoption board ladies were v helpful.

Due date for the October mc (4) is coming fast... by the end of May I was supposed to be giving birth...

Yesterday my husband said I live too much in the past as he had forgotten...

sigh

jbrd glad to see here. It is terrible what you have had to go through. I cannot imagine what a difficult time you must be going through. You have had your share of bad luck and I do hope things will turn for the better for you.

Hello to all the newbies and sorry that you find yourself on this thread.

Nothing much going on here. Finally got AF a week ago and am now waiting to see how this first cycle pans out!

baking not long for you now. You have been so kind and helpful to all of us who have joined the thread and I just wanted to say thank you. I hope we will all have similar success stories like you!

Thanks Baking, I'm ok, just wallowing. Think I'm getting a head cold so feeling bleugh. DH is being fantastically supportive.
I want to add my thanks to you, your support and wisdom have been invaluable.
Waves to everyone, too. xx

Good to see you here JBrd, IYKWIM. That feeling of wanting to make something happen to restore some hopefulness is so understandable.

Tiny, me too, coming up in June, but then another in July and again in November. I don't make a note of any dates any more, I find it too hard to have the anniversaries. Shit, it's hard!

Baking, ditto the others, I shudder to think about the floundering mess we'll become when you leave us!

Hi to everyone else here who I haven't introduced myself to. Glad and sorry you're here. It's beginning to feel a bit Shawshank to me, and probably others can identify with that sensation...

Anyhoo, about me. I had my consultant appointment today. He sent us off for karyotyping, the final test that he can offer us. Everything else has come back normal, but he still believes there is hope for me, and says he'd tell me if not. He has prescribed aspirin, heparin and progesterone, even though there's no evidence of any disorder, and talked about them providing a placebo effect if nothing else, so I hope it isn't saline I'll be injecting!

I said I wanted to go and see Prof Q, and his eyes lit up! He said he has tonnes of respect for her, says she's mad but in a nice way, and thinks her research and treatment are both really sound. He's happy to write me a letter detailing all the test results for me to take with me to Prof Q, and suggests holding off going to see her until I've got the karyotype tests back.

All in all, odd though he is, it was a much more successful meeting, and I'm really pleased that I have his support to see Prof Q.

A little more hope in Tanny Towers than last week. Bloody rollercoaster emotions!

Oh shit JBrd I didn't realise you had another loss. When I left the preggers thread I think you were still pregnant. I am so so sorry. I will spend some time reading the backlog and getting up to speed. I hope you are ok.

Tanny I am new to this game but I hear great things about prof q. I am stuck between looking for more answers and just rolling dice again.

I just read back the thread. JBrd i am heart broken for you. I was completely rooting for you and squiz, convinced you were home and dry. I can't imagine how tough that is. These are the suckiest of reunions. Hang in there.xx

aoife Yes, I was still pg when you had to leave the thread - got to 17 weeks this time, but again no happy ending. It's just so crap

Ah yes, the NK cells testing... Something else that keeps popping up in my head, I really need to look into this.
There is so much stuff out there that I want/need to look into, but can't muster the motivation to start - I keep putting it off. My head clearly wants a break from all this testing, ttc and pregnancy business! And at the same time, I feel panicky about time running out. Argh!

Well, I'm going away on a work trip tomorrow, that should at least keep me busy until the end of the week.

Hello. I'm new :) Been lurking for quite a while on and off- well, since my 2nd mc a year and a half ago. I didn't join in at the time but read lots and lots and it really helped me get through it, so thank you and I'm so sorry to hear of so many of you going through these losses. I am 39. I had my 3rd mc in March. (1st mc 6wks, 2mc MMC at 12 weeks at home- won't be doing that again hence choosing day surgery for 3rd mc at 8wks (hb at 6wks but gone by 7) GP has had 3 mc too so is sympathetic- appt with RM clinic is in 2 weeks). I am utterly grateful to have my ds who is about to turn 5. I'm desperate for him to have a sibling and have just one more baby. My preferred method of coping is to keep it all under a giant hermetically sealed lid, best for sailing past pregnant ladies/ mums with multiples and the mums that had their baby at the same time as me now having more etc- I like these women- but don't want them to know and be the miscarriage lady at nursery- although I know some of them have, or must have been through mc once or twice. But currently ttc and the arrival of another period (2nd cycle post mc) instead of a bfp has annoyingly loosened that lid, so here I am. Part sad, part increasingly obsessed with fertility, part pissed off and part guilty for feeling darkly glad I can at least drink wine and eat brie this weekend. Does that make sense? It's nice to meet you and I've got my fingers crossed for everyone here.

sorry- just realised I actually typed a bit of a rude word there in my post... should have put peed off or starred it out, not the above- apologies!

Hi tanny really glad your appointment went well. Great to hear that eyes are starting to light up rather than roll when Prof Q is mentioned. You might want to bear in mind that karyotyping takes ages to come back (6-8 weeks) so unless you have a reason to think it will give you an answer, and it's normally more of a dotting i's and crossing t's sort of thing, I'd do both concurrently. You need to be 7-10 days post ov for the prof then up to a month for results, so might also take that sort of time waiting for the opportune moment. That way you have all the info back in 8 weeks and can decide what to do next.

jbrd I'm amazed you are coping with work - guess you favour keeping busy (me too) but make sure you also have time to yourself. We are all thinking of you, wish there was more we could do for you at such an awful time.

betty welcome, sorry you have reason to be here but hope some company is helpful. Blimey, this is Mumsnet you know, you don't have to apologise for being pissed off! We have coped with worse I hope your RM appointment is productive.

tiny sorry you are facing an anniversary without much support. 1st May was the 5th anniversary of my first MC and I still feel sad about it this time of year. I had a forget-me-not charm for that baby. For my sins we organise the Christian Aid week collection in our local area which involves a lot of pounding the streets delivering envelopes every year in early May and there are forget-me-nots everywhere. Like tanny I've become less attached to anniversaries and EDDs once I'm past the first one now, but that's not because they are any less significant, it's just self preservation. Would it help you to honour the date somehow?