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?

Seems like a bit of spring has arrived today which must be a good sign! Just recovering from horrendous flu so for once v much hoping I don't get a BFP next week as I am sure my body hasn't been a great environment. Nice to hear from you lancashire and just sorry to hear that things are difficult. just I wrote a long reply to your post but it wiped so here goes again...I've been looking into light AFs - seems that mine are caused by a thin lining. I am sure it has something to do with all the ERPCs I've had though - got a hysteroscopy (spelling?) booked in May - Raj Rai wanted to give me some time to put some weight on as that can also effect having a decent lining. Anyway in the meantime I've had a read around about natural ways to improve your lining and this cycle I've tried: one glass of pure pomegranate juice a day (pretty gross), one cup of raspberry leaf tea a day, vitamin e and vitamin c - did this until ovulation and then stopped. I'll let you know how I get on when I get my AF next week! Brazil nuts and pineapple core are also meant to help. There are supplements you can take but the above is about as far as I wanted to go with self medication for now. Sounds like a good idea to go for some counselling as you've had to deal with so much and it's absolutely not surprising that you are feeling - I've tried it once a long time ago and found it very helpful. Also going to see Prof Q but going to have to wait until May as we are away over the next two months during the times I would need to go. Let us know how you get on...
Hi to everyone else xx

Thanks Not, good info. I have some raspberry leaf tea so will give that a go. I quite like it . When you have your hysteroscopy, be aware you will be on the ward in a gown all day and your OH will be sent to wander the streets all day. That's how they roll at St Mary's, no partners on the ward! Good luck with it, and enjoy some yummy treats in the mean time. xx

Waves at lancashire nice to hear from you. Sorry you are having a tough time at the moment.

tanny how are you today?

I'm thinking of emailing Prof Q and asking to be put on commission! Hope she is able to help many of you.

Ha ha, yes she should be employing you as her chief rep baking!

Hi Baking, I seem to have slipped back a couple of days. I didn't see the consultant on Thursday as he was busy elsewhere, so I left there feeling a bit let down and empty. I went to see my GP yesterday to get a sick note and he wrote to the consultant whilst I was there to ask about a plan of action. I could have kissed him!

I thought this was another light bleed miscarriage a couple of days ago, but it's not gone away, and today has got heavier again. Stupidly I threw myself into making a necklace (I'm a silversmith in my spare time) and ended up having to come back to bed feeling like I've been run over again.

I guess I just need to take it easy for now, and hope I hear from the gynae consultant soon.

I'm doing lots of crying, and drinking of sugary tea...

Hi Tanny - I think you're right, taking it easy is the best plan right now if you can. Sometimes with my previous MC's its gone heavy/light etc over a few days. When I think I am at the end, I find that I am not which is upsetting and exhausting so I really do feel for you.
That was great of your GP to be proactive and get that ball rolling for you. It's that type of initiative that really helps.

Tanny glad to hear your GP is being supportive. Hope you are managing to take your own advice and take it easy. IME there's a cumulative effect of losses and at some point you need to stop trying to be positive and move forward and just wallow and be looked after. Plenty of time for positivity a bit further down the road.

Hi ladies

Haven't read back on this thread but do you mind if I join?
I had 3 chemical mcs nov/dec/jan, had February off and due to ov this coming week.
I have a beautiful 2 1/2 yo ds who I absolutely adore.
I'm so scared about the next few weeks and it all happening again.

I have a recurrent mc clinic appt tomorrow afternoon and I don't really know what to expect apart from blood tests etc.
I had a scan after my last CP and the nurse was absolutely fabulous and she said the consultant was brilliant.
I'm just writing down questions to ask at the moment.
Can anyone shed any light on what goes on at the appt? I'm in the uk, not sure if that matters.

So sorry for all of your losses, it just absolutely is the worst thing ever.

Btw my appt is with prof Quenby at university hospital Coventry, apparently that's a good thing!

prof Q is great, I saw her privately for NK testing after my 4th MC, she's really down to earth but also v positive. I would think you'll have the standard tests first (blood tests and poss a scan , though sounds like you've done this already) but she's at the cutting edge of research and does work on immune problems and inadequate endometrial growth. I don't know whether you can have the tests on the NHS if you've been referred to her, at moment not covered in the nice guidelines as it's all new, but worth asking and not ridiculously expensive privately (£350) if the standard tests don't give you an answer. Good luck!

That's good to know baking. Coventry is my nearest big hospital (we have a local one but only half open), my gp referred me to her so hopefully the nhs will cover it, but if not I'll sort it. Thing is, I've been reading about the nk test, but I'm due to ov tomorrow or weds, and wasn't told not to try this month so if I am pg this month I don't really know what they will do to help it stick as it were.

Morning all,
Hope you don't mind me joining in. Sorry that we're all here ??

I've now had 2 mc 1st at 7 weeks in nov 2013 and 2nd just last week at 5+2 weeks.

Spoken to my gp this am he's not to worried but if I have anymore problems he said I'd be referred straight away. Hate the fact you have to wait for 3 mc's before the nhs will even look at you. I also asked if I could start taking aspirin (as I have read a lot on here about clotty blood and lots of ladies been subscribed it) he said that a low dose will do no harm and he's happy for me to try. I've also got a good herbal shop in town so plan on going there later see if she has any tips.

Good luck to all

So I've just come out of clinic with Prof Quenby (aka the nutty professor) omg she is hilarious!!!
Anyway, she's given me a prescription for progesterone pesseries to insert twice daily from cd21-28 (great timing as I'm cd13 today), and I'm currently waiting for bloods.

She said she can see no problem with me from my bloods (said taking my baby aspirin wouldn't have affected results), just a case of keeping a pregnancy.

She also said my progesterone isn't a massive problem but it's not massively high, and due to my spotting from 7/8dpo she's prescribed the progesterone.
She's told me to keep it up for 3 months then they'll do further tests if needs be.
But she also said see you at 6 weeks for your first scan in a few weeks!!
It was soooo good to come out of an appointment feeling positive!!

She did say however that maybe it won't happen the first month, but she is certainly positive for one I the next 3 months.

Hi all, not been on in a few weeks. Welcome to any newbies! So sorry to tanny for your recent loss, hope you are taking care of yourself.

I saw my consultant today as a follow up from blood tests and last erpc. (Those who don't know, I've had 7 losses but have a DS which was a straightforward no medical help pregnancy after my 3rd loss). Blood tests were all normal and karyotyping normal also. He did more blood tests looking for other things but in mean time has literally prescribed me everything! Progesterone again (made no difference last 2 times), heparin, prednisolone and high dose folic acid. He talked a bit about NK cells and said rather than testing he'd just prescribe me everything as "there's no harm in it"! We have a first appointment at st Mary's booked in a month privately, now wondering if any point going as even if they find anything what other treatment would they give me? I know I have no uterus or cervical problems. Just think that st Mary's is expensive and if we're just going to end up with similar treatment is it worth it?

Consultant also said to just get on with trying again as long as mentally ready as no medical reason to delay.

Any advice greatly appreciated!!

Choccy, great news. Glad you have a plan. It's always better when you have a plan!

Katie, where was this clinic with the highly benevolent throw everything at the problem consultant? I know that St Mary's are much more specific strict/picky about what they prescribe, and their tests are much more sensitive, in particular the TEG test which is a blood test where they literally run down to the lab with your blood to process it in 30 mins to see if its clotting normally. They also repeat this particular test once you're PG again as some ladies seem to develop a clotting issue only when PG. I am taking a month off ttc at the moment due to going for tests at Coventry and at first I thought the same (lots of money, already seen someone, want to get on with it etc.) but after 3 months of no luck we decided that one more month and a little bit more money was worth it just to know we'd done everything possible to find out if we could get treatment or whatever. It's a personal decision, and, as I say, it took me 3 cycles to realise it.

However, St Mary's do insist that they test you in a non PG state, so if you rock up there PG, they might not test you and you'd go to the back of the queue (of a line you would not need to stand it as you would, I'm sure, have a boring and successful pregnancy!).

Good luck with whatever you decide.

katie that sounds like the protocol I was on which has worked for me (touch wood) but I'm v surprised you are bring prescribed steroids without a diagnosis since they are certainly not risk-free. I know of a couple of people on the pred thread who have permanently damaged their adrenal glands, there are lots of more minor side effects (insomnia, muscle weakness, weight gain) increased risk of cleft lip/palate for baby and increased risk of low birthweight baby. For me, set against 3 consecutive losses and a high NK cells diagnosis, it was a risk worth taking, and Prof Q's protocol is moderate dose (20mg) from 4-10 weeks of pregnancy then tapering off, so fairly short term. I'm having additional scans for the potential growth issues and 20 week scan showed lip & palate were fine. I'd think carefully before taking them without a diagnosis though, the doctor should at least have talked through the risks with you.

Thanks for all the advice. The steroids I've got are only 10mg a day so quite low dose and I'm to take them up to just before 12 weeks and wean off. He said that a low dose over a short period shouldn't give bad side effects. I think if I do get pregnant I will definitely take the other prescriptions and think carefully about the prednisolone. But after 7 losses I am willing to give anything a go!!

Phone and talk to him about it again katie The London NK doctors are using 25 or 40mg for immunosuppression, often with IVIG or intralipids. Prof Q has a slightly different approach and thinks the NK cells are a marker for a local steroid production deficiency, so is using lower doses, most people on her protocol seem to be on 20 mg. Ask questions about what it's based on? No point having the associated risks without a firm idea what they are supposed to be doing for you. Or come have a chat to others on the pred thread ( conception board) to help you decide.

Evening ladies. I've been to see a very good herbalist and she has recommended 'vitex agnus castus' it levels out you hormones. I'm going to give it a try x

Hi mrsG sorry I missed your earlier post. I think a second MC is very difficult to deal with because you find it difficult to swallow the 'bad luck' a second time but nobody is taking it seriously. Hope you are coping ok, look after yourself.
my consultant advises against taking aspirin unless you have a diagnosed clotting problem, as she thinks it can interfere with implantation, but there are still plenty of doctors out there telling women to take 75mg and plenty of women who attribute their subsequent success to aspirin. I don't know anything about Angus castus but someone else might be able to help.
Are you planning on TTC again soon?

I know someone who had 2mc but is expecting her 4th child (any day now) did take agnus castus to help get pregnant. not sure of details though, but i know it worked for her

There are plenty of people who take AC on the ttc after mc thread. Seems to be popular.

Hi everyone. Shitsville at Tanny Towers, but I think it's probably after a difficult counselling session yesterday.

I have agreed with dh to have 3 months off ttc. Can't even think about it at the moment...

tanny god yes counselling is hard.
I had 5 sessions after my October mc and the first 2 lest me SHATTERED and in tears and knocked out the whole day...

but it works and by the last one I told her I was ready to stop and didn't even have my 6th session

I hope it will be good for you. it gets worse before it gets better but it's liberating to talk and cry

lest = left

Yes baking your right. Very frustrating with my just a 'bad luck' diagnosis! Heard lots of good thing about the agnus so definitely worth a try. Yes I just got the 75g aspirin so will try that to. Ttc straight away, going to start my ov testing again in the next few days And hopefully I'll get pregnant quickly again. Xx