Recurrent Miscarriage Support Thread 20 - tests, treatment, trying again.

[barkingtreefrog]

Buckle up, the threads move like lightening! Tea, sympathy, information, support and combined wisdom to guide you through the maze of testing and treatment for recurrent miscarriage. Newbies always most welcome.

Please start with the traditional recap of your stats.

Hi Pop. I'm going to Coventry on Monday so will ask and update. It seems to be another autoimmune theory which is why I wonder if corticosteroids would be expected to help.

www.dailymail.co.uk/news/article-3005114/Exposed-worthless-fertility-treatments-cost-women-desperate-mothers-1-000-time.html

Another article from [looks at floor] Daily Mail (sorry but like the format of all news on one page... although definition of 'news' is debatable).

Seems quite one-sided and comments mention many success stories.

I watched Panorama once about a fertility specialist called Mohammed Taranisi (?). Explained how he was ripping off vulnerable women however I then heard another side of the story that his methods were experimental but had been very successful? Guess you have to do your own research.

www.telegraph.co.uk/news/health/news/9383167/Mohammed-Taranissi-interview-we-help-nature-to-achieve-what-its-meant-to-achieve.html

boozle you can see some of the article by going to the author's twitter (no I'm not a weird stalker but I tried to find it online earlier on this evening). She's taken photos of the article and uploaded them. You need to squint a bit to be able to read it and I could only find one page.

Well I'm just glad I found you guys for knowledge. None of the treatments we discuss are expensive bogus ones, but I'm sure they do exist. Some of the comments to that article are pretty nasty, I wouldn't recommend reading those if feeling low right now.

Thanks for the new thread and cheat sheet barking great idea! Hope your trigger shot does the job this evening.

Me, 40, 2 DS aged 8 and 4. First MC between them then 3 trying for dc3. Nhs tests normal, 4th embryo normal, high NK cells diagnosed at Coventry, successful pregnancy on progesterone, heparin and steroids resulting in DD born May 2014.

F was diagnosed with infantile spasms, a rare and catastrophic form of epilepsy, in January and we are coming to the end of our 9th week on steroids, only one more to endure go. She's been seizure free for 6 weeks and is regaining ground developmentally. Thanks so much to everyone who has asked after her, I don't want to derail the thread too much but I'll post an update at the start of each new thread, which seem to only last a couple of weeks anyway, chatty bunch!

Trigger shot done! That was a weird one. Little glass bottles of powder and liquid to mix together.

ifinished that article lists nk cells as one of the rip off tests!
Our consultant told us he'd been asked to speak at the fertility show, specifically to debunk a lot of the treatments being sold to desperate women. There is so much rubbish out there but there's so much desperation to feed it unfortunately . I don't want to even think about how much money I've spent over the years on acupuncture, Chinese herbs, vitamins, etc etc.

Quick worried check in... I got my positive OPK on Friday, but no temp spike yet. So LH surge day 16, now day 18. What does a long follicular phase mean? Lying in bed at my aunt's panicking about, well, everything really!

Glad the trigger shot is done barking. Is that the end of the injections for now then? Keeping everything crossed that those eggs are in tip top condition.

So glad to hear that faith is doing well baking, and that her seizures have calmed down.

My consultant was worried that I was still very vulnerable (she's probably right), and concerned that I was going to pay for treatment anywhere. She winced when I told her the cost of Coventry but I don't think it's that bad and if it does the trick (or even for the peace of mind that I've crossed another thing of the list), then it's worth it for me

My temp took 5 days to rise last month flen, and my cycle is always around 32+ days (34 this month). Whilst it's not the ideal situation, it's never stopped me from falling pregnant. My acu'ist is working on this at the moment to bring my bbt down and shorten follicular phase. I think it's the luteal phase that's more important than follicular, so try not to worry too much (easier said than done! )

Fingers crossed Barking x

Flen, sorry can't help you but interested to know the answer

Read the articles, which made interesting reading.

Think AF is finally on its way as had bit of spotting last night before bed. Never had this before, just normally straight it. Certainly teasing me the whole way- ggrh!

barking thanks for the cheat sheet and well done on your trigger shot (even though it makes me think of pirates)

boozle didn't realise how far you are in your pregnancy, super news keep it up!

My stats:

Me and DH are 33.
DS Jan 2011
5 miscarriages between Oct 2012 and Dec 2014.

Went on TABLET trial and they found I had thyroid antibodies so the put me on mystery capsules (either levothyroxine or placebo). That scanned me at 6 weeks but the sack measured 5 weeks and there was no way to tell whether fetus is developing or not. They measured my thyroid function and discovered it was out of range so they concluded I was on the placebo, took me off the trial and got my GP to prescribe the treatment (levothyroxine) as it was now evident that my thyroid function is going awry in early pregnancy. I am going back for a re-scan on Tuesday (7 weeks?).

I'm wierdy calm about Tuesday. Another mc would be crushing, devastating. But maybe it will be OK.

Just adding my stats. Thanks barking for the list - quite moving to see so much pain written in a few lines. It struck me too, how many people with a DC have a DS. Quite disturbing. Definitely asking Prof Brosens about it on Monday.

Age 41, DP 47
2011 DS born

1. mmc 2012 died 7.5 wks
2. tfmr 2013 at 13 wks, high chance of dying in utero, she had normal chromosomes.
3. mmc 2014 at 10 wks, T22

• My tests came back normal from RMC c!inic

4) mc 2014 at 8-9 wks, HB seen but slow and behind for dates from start. Normal chromosomes

• Went to Coventry, high uNK cells diagnosed

5) mc 2014 at 9 wks, after a scan a few days before looked great. No chromosome results available.

13 boys and 4 girls. That's got to be statistically significant.

I mean from the quick check list

Morning ladies. Early awake for me, too busy thinking about wedmin.

flen I have read that each woman is different when it comes to how long after ov you get a temp rise. It could be you have ov'd but temp not risen yet? Also, for some Lh surge comes 36 hours before ov. So you might have only ov'd yesterday. It's so bloody confusing all of this. I've realised I have a long luteal phase (16 days) which means I've DTD-ing on the fertile days for a cycle 2 days longer than mine actually is - if you get my drift.

So glad faith is doing better baking but it still must be so difficult to be in limbo. Thinking of you.

Last year after we had the TFMR we bought a little apricot tree to remember our little boy. We chose it because it fruits in July (his due date) and the variety is called a Tomcot - dp's name is Tom. Seemed like it was meant to be. Just been into the garden and it's got blossom all over it. Maybe we'll get some apricots this year. Sad but also hopeful.

Have a lovely day all

Really need to catch up on those articles before Coventry tomorrow.

monten lovely your tree is in blossom, glad its bringing you hope x

Morning All,
Here's my stats:
3x mmcs, #1 and #2 at 6 and a half weeks, both discovered on scans following spotting. This was Nov '11 and May '12. Then some local tests, all clear. Prescribed 400mg progesterone from bfp and baby aspirin 'just in case', investigations for thin lining following repeat ERPCs and complications from MMC#2, which needed a course of HRT to 're-set' my cycle, which had pretty much shut down after a couple of issues with retained products after unsuccessful ERPCs.
Then conceived #3 and got past danger point, saw a good scan at 9.1 weeks only to discover mmc#3 at routine 13 week scan. Turned out baby had Turner Syndrome after genetic testing. That was June '13.
RMC testing at St Mary's, London all clear, but uterine septum removed October '13.
After no joy for 3 months, went for uNK testing at Coventry, all normal there, too, well, thin lining and 'lower end of normal', but normal uNK cells.
Took another 7 months to conceive again and was prescribed the protocol I'm on 400mg progesterone twice daily (from bfp - was originally 200mg twice daily, but increased due to some light spotting) and daily heparin injections which I started at 5.5 weeks after 'location' scan.
Now 24 weeks. I'm off both the heparin (stopped at 13 weeks) and progesterone (weaned down and finally stopped at the beginning of 15 weeks).
Te baby is fine, however this pregnancy has been classified 'high rick' because the placenta has totally grown over my cervix. Now have the diagnosis of Placenta Praevia. So we're looking at a re-scan at 32 weeks and, if it hasn't moved - its a complete case so they think this is quite unlikely - I'll need a planned c-section at 36 weeks (end of May). In the mean time, if I have any spotting I'm straight on to the labour ward for 48 hours (at least) until it settled and bed rest if that should keep happening. Really want to avoid an emergency c-section before 36 weeks!!! So taking it as easy as possible now (which is not easy because I am normally quite active and I keep forgetting).
I'm 38 (39 next week !!!) and DH is 37. We have no DC, and have been trying to start a family for 3.5 years.

Waves to everyone.

Barking, hope the shot does its job and you get a good 'harvest'! Thanks for the summary, it makes it easier to remember what stage people are up to.

Flen, I wouldn't worry about a few days delay on the FP, its an unusually short or long LP that causes issues.

Those articles were interesting. I noticed that it was blood NK cells that were on the 'danger list', not uNK cells (which were not mentioned at all). To be honest, I'm a little skeptical about the blood test, too. The irony is that, in some cases, its probably the feeling of empowerment that someone is actually listening and prepared to do something to help you that actually makes the difference. I don't include the work at Coventry in the 'danger list' because its active research and there is published material that you can read, and more papers will be published as the research progresses. I don't find a one of payment of £360 unreasonable for what you get.

Lovely about the tree monten and baking thank you so much for the update on baby Faith. I am so glad she has been seizure free for so long and will have everything crossed for a successful withdrawal from the drugs. I think about faith more than is possiblt sensible for a baby I have never met. She feels like "our" baby! Bertie too now. How is the munchkin?

Barkingtreefrog - i just realised i name checked bakingtins for syarting the new thread, sorry! B names mixed up...i am a moron!
Bought the times article. Just glad to see rmc being raised to the public eye. Am going to read the other two articles posted...when less hungover!

My sats are very straight forward.
Dh 49 (old giffer)
Me 40 (depressing)
Ds 20 months (love of life, demi-god)
Mc all natural.
1st - june 14, 6 weeks.
2nd - october 14, 7 weeks.
3rd - feb 15, 11 weeks, but didnt progress past 7.
Get pg easy, but since son just can't keep them. Have consultant appointment in leeds on april 2nd and condidering coventry, but still waiting for af since last mc.

Flen have you been temping long or is this your first cycle? When you've tracked a few it gets much easier to see the pattern of your individual cycle. Opks will pick up an LH rise 36 hours before ovulation. Because the idea of the sticks is to tell you when to have sex, if you ovulated on that day it would be a bit late to be most useful. Obviously depending on when in the day you ovulated it could be 2 or 3 days later you see your temp rise. It sounds stupid but it really is easier to see once you've got a few cycles to look at, as the patterns become much clearer with more data.

just you are right, and I agree anyway slapped wrist for skim reading

March yes, all over for the injections, unless it works! I think the trigger shot must have done something, I woke in the night with really bad cramps. They're not collecting the eggs for another 24 hours though, hope nothing is happening too early?!

Counting thinking about you for Tuesday I still have hope.

baking fingers crossed for when Faith gets off the drugs.

freckle there's only one letter difference, easy mistake! What was the main message in the article? Is it worth paying to read?!

The Times article was more about one person's journey and emotional response to miscarriage, she had 4mc and 3 failed IVF and got no answers from NHS testing and called it a day. Plugged the Miscarriage Association but did not mention any other avenues of testing. Good for raising awareness but still gives the impression RMC is so rare that it is newsworthy.

I sort of agree with the other article that we are vulnerable to the snake oil sellers, but the flip side is there is so little research we don't know what works and what doesn't, and most of us don't have the luxury of time to wait for research to move on, or the resilience for multiple attempts - I felt like I had to throw everything at a last attempt. It's not helpful for NHS consultants to roll their eyes when you mention other treatments if with the previous breath they've said there is nothing they can do for you!

Thanks for the reassurance everyone. barking I've been temping for a while but this is the first month I've used OPKs as well. My cycle has changed completely since the last miscarriage and still seems to be shifting about which is very disconcerting as I've been used to regular cycles. Previously temp rise was reliably day 15, but now day 17 and nothing. Will talk it over with my acupuncturist when I next see him. I hate all the worst case scenario imaginings that flood in as soon as something is even slightly askew... This morning I was convinced the last D&C must have done some damage etc etc...