Update from worrybum re: recurrent miscarriage clinic.

[worrybum]

Went yesterday. Prof. was great and reassured me that we are under his care until our family is complete .

There is no one identifiable cause for my four miscarriages but there are a couple of findings that he is confident are contributing factors and we now have the bigger picture. The good news is that both are treatable.

My blood results show that I have slightly elevated levels of homocysteine. I have been advised to take the normal dose of folic acid until I conceive and then my gp needs to prescribe a higher dose when I get a BFP. He is writing to my gp to inform them of this.

The other issue is polycystic ovaries! He picked up on this immediately from the ultrasound scan he also did yesterday. I am with the gynaecologist that I saw after my 3rd miscarriage because I asked at the time if this could be a cause and they ruled it out because I had regular periods and no problem conceiving although I was pointing out to them that I had a lot of the other signs (father was bals before the age of 30, I have developed lots of skin tags, have weight gain, spotty skin, have turned into a hairy yeti -God I sound attractive don't I? Waxing, foundation and bridget Jones knickers do work miracles though you know). Anyway at least this guy is on the ball.

He seems to be confident that he can fix me and has said that as soon as I get pregnant again (obviously after starting the medication - we have decided to wait 3 months) I ring his nurse (she was there yesterday also and is lovely) and they will arrnage for regular reassurance scans starting at 4 and a half weeks so that they can carefully monitor the pregnancy's progression and check that size etx is correct for the gestation.

So what do you think to that then eh? I'm quite shocked. I honestly thought that they would be telling me that there was naff all they could find and bugger all we could do!

It's my appointment this afternoon... not much to say except I'm bricking it slightly!

Hi ladies. Am logged on my mum's puter here in sunny California and thought I'd quickly check in and see how you all are. It's about 11.15 in the morning here and already a bit too hot for me today. Am avoiding the sun for a few days - got burned yesterday wearing factor 30! and am a little sore.

So how did it go TNTO?

Hiya,

Oooh WB what I wouldn't give to be in california now.... though it's pretty nice here anyway!

Er, not much positive to say really - a very disappointing, almost farcical experience yesterday... sorry I think this might be quite long, I'm still gobsmacked.

We went in and the doc said "so you had a miscarriage, I'm sorry about that". And I said, "well, we've had 3 actually, and we're here to get results of our tests and find out what happens next"

She spends ages looking at my notes, then disappears for about 10 mins. Comes back with my clotting results, which thankfully are clear, and says "So your results are clear, which is good, and although you must be very upset, you can try again, and you have a 70% chance of success. Let us know when you're pregnant again and we'll get you a scan."

By this time I was in tears and said what about the other tests? All I got was a blank look! At which point I said, I don't mean to be rude, but are you a miscarriage specialist? she replied No, the specialist is out today!! I explained that we'd been expecting to see a specialist, and had a load of questions to ask...

In the end, I told her what I needed (hormone test, scan, swabs, results of the other blood tests we've already had done, and an appointment with the real specialist) and she arranged them all, as I think she was pretty embarrassed by this time.

So we're seeing the proper specialist in 6 weeks, by which time we'll have had all the tests, and all the results should be back.

So we kind of rescued the situation by organising what we needed (well I did, DH was mute beside me, which is his rather unhelpful way of getting upset, bless him) but afterwards, I just felt really let down, disappointed and exhausted.

WB, you are making me seriously jealous!

ARGH, TNTO! How annoying for you. Good news about the clotting tests, I guess? And at least there were tests arranged so you'll be able to talk through them with someone who knows more. My appointment was only really a fact-find. It was reassuring that it was with a nice doctor, but didn't really to be, I suppose. Keep us updated and take it easy.

It makes you wonder how people who can't stand up for themselves deal with the NHS...

TNTO, sometimes you do have to be firm with them. next time ask about blood thinners (some clotting disoders dont show until you are pg) did she say anything about low dose asprin? for your next appt scour mn a few days before and put together a list. ask what they plan to do the next time you are pg, what timescale will they give you to become pg again and what they will do if you dont within that time, what extra tests they will give you once you are pg, which hospitalwill look after you, when you should contact them (and don't take the "8w" standard answer)

Hi

Hope nobody minds me butting in on this thread, but I have a couple of questions and you all seem to know what you are talking about .

I have had 2 ectopics & 3 miscarriages. I have only just been given an appointment with a consultant to investigate. They would do nothing up until now when I've just had my 3rd miscarriage.

Anyway - I am not really expecting anything great from this appointment. My experience of our local hospital in dealing with this stuff is pretty poor, and I know they do not have a miscarriage specialist. The person I am seeing is a 'fertility consultant'.

I am astounded at the difference in standard between Worrybum's appointment & TNTO's. Needless to say, I am expecting mine to be more similar to TNTO's!

So assuming this is the case, what list of tests and swabs should I make sure that I ask for?

Thank you so much for all your advice. I don't know anybody in real life who has gone through anything like this.

sparkly, they should test for clotting disorders, your LH and FSH levels (to check ovulation is effective) chromosone disorders and one or two others (the names of which escape me) they should run some swabs to indicate infection and expect an internal. because of your eps (which im horrified they havent investigated yet) they should offer you a HSG (which checks the state of your fallopian tubes) or a lap & dye. did you have a salpingectomy or the injection to treat the eps?

Hello again,

Yeah OTC, at least my clotting test was clear - grateful for small mercies!

Lissie, thanks for the advice, I think my experience really shows that you have to be your own advocate with the NHS! We had a full A4 page of questions, but there seemed no point asking them. In 2 instances, she actually invented percentages that I knew were wrong from reading Lesley Regan's book. We'll take the list to the appt with the real specialist.

I took baby aspirin last time, but have heard that St Mary's now recommend 2 a day in some cases, so will prob do that next time regardless.

Sparkly, there's a shed load of info out there, and it is pretty confusing... as specialists seem to disagree about potential causes, and therefore offer different treatments. I'd recommend Lesley Regan's book, and searching on here for 'recurrent miscarriage'. But the basic tests will probably be:
You
clotting blood test - to see if you're affecting the baby's blood supply.
ultrasound scan - to look for physical reasons.
hormone tests - check your cycle.
I also asked for swabs to be done for infections, but I don't know if that's standard.
You & DP
chromosome blood test - to see if either of your genetics are causing it.

Anyone got anything else to add? I've prob forgotten something!

oh, and I got made frigging redundant yesterday... it never rains but it pours.

Though to be honest, I was quite surprised at my lack of reaction, it has been in the pipeline for a while, so it was almost a relief. I was far more upset about the crappy appointment on Tuesday, at least all this rubbish puts other life ishoos into perspective

oops x post with lissie on sparkly's tests!

oh TNTO, thats shite!

thanks lissie, at least I don't feel guilty about loitering on MN in work time now!

I have only really been hanging on here for convenience because we're ttc, so it isn't a big emotional wrench, just a hassle I could do without....

Yeah Jules, you never tested positive for clotting did you, but the aspirin & heparin worked, or the high dose folate or whatever it may have been.... something worked.

You've got the old redundancy thing going on too? There's a lot of it around at the mo...

Have mailed you about the book, sounds interesting.

Hello all!

Just checking in to see how your appointment went TNTO. Can't imagine how frustrating it must have been for you. That 70% success rate she mentioned is b*ocks by the way without medical assistance. Anyone who has read any literature on recurrent miscarriage would know that. Good for you for insisting on seeing someone who knows what they are talking about. I'd have been tempted to also suggest she goes back to medical school! Sorry to hear about the redundancy too. Hope things improve for you soon.

Jules that's good news about the higher dose of folic acid -gives me some hope- thanks.

On another note I found myself in the middle of a different drama the other day. About half an hour after I last posted we had an earthquake over here. Was pretty scary stuff!

Hi everyone. I've not been on for a while so it's nice to be back among friends! Feeling a bit fragile this week cos my due date from 2nd mc is on 5/8/08.

Anyway - that's great news worrybum I bet it gave you a real boost feeling like someone was actually taking the whole recurrent mc thing seriously. Fingers crossed you'll have a big bump soon!!

I'm not entirely sure what I'm supposed to do now, 3 mc last year, had blood results which were fine, had more blood taken which I'm too chicken to phone up for the results for and the MW at EPU just said something about coming to a pre pregnancy clinic. AIBU I don't want a pre bloody pregnancy clinic, I know how to get pregnant, I obviously can get pregnant I just can't stay f***g pregnant so I would like a medical doctor recurrent miscarraige clinic. -PHEW- rant over!!

Can I ask has everyone who's had 3 or more mc had a ultrasound after?

Hi sorry to butt in also on this, but bits of every post ring so true in my case (apart from the earthquake in California). Have a 4 yr old, just had 3rd mmc a month ago and had so much of what I believe important dismissed by my consultant. I was told I had a thin endometrium prior to mc #1 and would probably miscarry if I could conceive at all, I did, and I did. I was then referred and pg again by time I saw consultant. He dismissed this and said if that was a problem I wouldnt have conceived at all. He has dismissed my PCOS as not a contributing factor and also thinks checking progesterone levels pointless (I believe low levels contribute to thin endometrium). Rather than do further blood tests (clotting etc) as well as hormones which we have done already) he has referred me to Dr Paul Armstrong for immunotherapy. I find this really weird and frustrating that this is his next port of call rather than looking at all these other things that are clearly important. Am so frustrated at this, am 39 next month (aagggghh) and dont have time to get it wrong. BTW I think you are all amazing and after reading this thread dont feel quite so alone with this mc m'larky.

shazzaren, that must be soooo frustrating! can you ask to be referred elsewhere?

I have asked my GP to write to the consultant to get him to refer me to St Mary's but have decided to confront the consultant one last time and challenge him again on all these things. I am usually quite a strong willed person but have been a blubbering wreck during our appointments because it is usually just after he has told me he cant find a heart beat so I have just gone along with what he has said. And he is supposed to be the specialist so dont feel I can push it, however, I have had a long chat with another lady recently who was under same consultant for 5 years, 7 miscarriages and he told her there was no hope for her (didnt test her for sticky blood, didnt put her on heparin etc) then she went to St Mary's and is 32 weeks with 1st pregnancy under them.

thats shocking. which hospital is this?

It is a Mr Booker at Shirley Oaks. I have heard some great things about him but believe he specialises in infertility which isnt my problem as get pg in a wink, just cant hold on to the blighters. His bedside manner is shocking too, having found out I had had mmc #2 the day before at local hospital, I went to see him and sat blubbering in his office while he spent 10 mins booting up his computer then trying to find my file, only sound in the room was me crying and dh's feet shuffling around awkwardly. Mr Booker didnt say a word, not a sorry, or anything. Weird.

hmmm, think you need to change cons. we are under both LWH and RSH's brand spanking new rmc clinic. one of them should get me to grow a sticky one (7mc's and 1ep)

Thing is they are a bit thin on the ground around here and the one I wanted isnt taking any new referrals. One last go then off to St Mary's RMC I think. Sorry about your 7mc and 1p, have you recently moved to the RMC and if so has it been tough to get positive again? For some reason my 3rd one hasnt been as tought as #1 and #2 as I think I dont believe for a second it will be ok any more so dissapointment is less.