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Recurrent Miscarriage Testing, trials and tribulations...Part 7!

987 replies

squizita · 07/06/2013 19:04

Hi all, carrying on from part 6. All kinicker-checkers, blood-testers, clinic-attenders and finger-crossers welcome. Nothing but love and crossed fingers...

OP posts:
nearlyreadytopop · 09/10/2013 10:31

hi purple thats good news, so glad you are feeling better.
baking pretty rubbish just to be sent out with no info. how long do u have to take it for?

ODB1515 · 09/10/2013 10:40

picardy - sorry test wasn't what you hoped for..... onwards and upwards and in the meantime, choc and wine Smile

Polka2 · 09/10/2013 10:41

Baking I absolutely agree. If it was for googling I wouldn't have had a clue (only used to injecting horses/sheep) never humans, I thinks its completely crazy.

Yes the ones I like (from Asda) are the ones where it sheaths itself after drug given, the ones I'm using currently aren't like that (normal needle/syringe) and are much fatter.

Sadly nowt to be done for drug burn, it does seem to lessen the more you do it though?!

ODB1515 · 09/10/2013 10:57

I got my day 21 progesterone result back as 33.6. Is this good? Would this explain why I spot for 8 days before each period and that often have early miscarriages? GP just said it shows I ovulated.....
Confused

xXjunebugXx · 09/10/2013 11:11

Hi ladies, I haven't been here in a while. I needed time out from everything miscarriage for a while. It was just taking over my life and it was just too depressing. It was causing problems at home tbh. Everything is fine but my husband was fining it all too upsetting, I was just online looking for reasons all the time and my mood wasn't good.
But now things are so much better. I have had some tests for clotting and the results are normal which is positive. I just need day 3 and day 21 tests now to check my hormones.

I think we will be waiting until next year to try again, the break of not being consumed with trying, thinking of trying and constant googling has been a real blessing.

I hope everyone is well x

xXjunebugXx · 09/10/2013 11:21

ODB151, in the UK I think 30 is within the normal range and means you have ovulated.

Bakingtins · 09/10/2013 11:44

From this website
Possible interpretation of results assuming the test is properly timed are:

  1. Progesterone > 30nmol/l – ovulation has occurred and the corpus luteum is producing sufficient progesterone to induce adequate secretory changes in the endometrium to assist implantation.
  2. Progesterone 3-30 nmol/l – ovulation has occurred > 10 days ago or
  3. Progesterone >120 nmol/l – two or more follicles have been recruited
  4. Progesterone

To me, just over 30 looks like it is probably ok but a bit borderline.

Also have a look at this which I found interesting - it basically says that a single blood test is very unreliable as a indicator of luteal function and that as there are no adverse effects of progesterone supplementation it should be used if in doubt.

Bakingtins · 09/10/2013 11:45

June good to see you! Glad you are feeling positive at the moment. Enjoy the break from the roller coaster.

ODB1515 · 09/10/2013 12:05

Bakingtins thanks so much - that is so useful!!!!

squizita · 10/10/2013 08:42

Hi all - tried to touch base yesterday but a little thing called "penisbeaker" crashed the site. I think there should be an acronym for it like POAS or AF. DYKIB (Dipping your knob in a beaker). Grin

Purple Very happy for you! Down to 22 is a good healthy drop. Know that feeling - the time will fly, use it to eat rare steak, drink wine and do all the things you cannot when TTC. :)

Baking Wah! Sent off to inject without help? That's a bit rough. Like you I'm OK with needles but some people are v nervous. If I get results back and have stickiness, thanks to all who recommend ASDA needles! :)

ODB 33 is- I was told when tracking be 'back to normal'- normal for progesterone on a cycle, but at the lower end. The assumption on Dr Google with spotting/early AF is it's always progesterone, get some cream etc but I enquired with Mr Aziz that there must be more to it because I have no problem with making progesterone but have a loopy cycle. Indeed that was the problem with some of my previous losses - bad egg/sperms 'making a go of it' but I had a lovely big corpus luteus and endometrail lining. Hmm. I'm trying high doses of key vitamins (Mr Aziz at St Mary's agreed it could only help and that vits D and B complex are important, as may be Omega oils - but be careful they don't have vit A in them). He suggested maybe that fluctuating progesterone (i.e. you can make it, but sometimes don't make enough) is linked to nutrition and to try that before 'patching' the problem with creams. Not that he would patch me anyway because I have enough lining and progesterone - just short cycles. Frustrating, as of course that takes tiiiiiime and who knows if it will work?

OP posts:
Bakingtins · 10/10/2013 09:29

Purple missed your update yesterday (stupid DYKIB made it v frustrating) but sounds like positive progress and must be a massive relief to have stopped bleeding.

Polka thanks, got on much better with inj yesterday. Also had some tips from someone on the pred thread who said don't pinch the skin, stretch it out flat (easier to get the 45 degrees) and get rid of the air before injecting. That, combined with the frozen carrots (no peas) seemed to make a big difference.

ODB1515 · 10/10/2013 10:52

I emailed my gynae who said i should take progesterone in the later half of my cycle so I've started today. Hopefully it will stop the spotting and help me keep a healthy pregnancy

squizita · 10/10/2013 12:30

Hmm having very odd twinges. Funny as I'm not even due 'on' with my shortest cycle length, but have already OVed. Probably my stupid fibroid being stupid. It's on the outside so apparently not a problem. Except for comfort when it throbs lol.

OP posts:
DownstairsMixUp · 10/10/2013 12:48

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nearlyreadytopop · 10/10/2013 13:00

hi down did he give anymore info on the cyst? I have pcos and at the last ultrasound one ovary was normal but the other was slightly cystic ie a few small cysts. I have been havinv these small cysts for the past 10 years and they seem to come and go.

squizita · 10/10/2013 22:13

down sometimes, if the pregnancy is failing due to not being viable, the luteal cyst ploughs on through and looks big and healthy. My epu noted my cyst as they said it would be of interest to the RMC clinic. Maybe this was what they noted? The cyst sometimes takes a while to die off, they said. Provided it doesn't become multiple and polycystic they said is was OK and expected after pregnancy whether lost or full term.

OP posts:
DownstairsMixUp · 11/10/2013 00:17

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Justonemoretime · 11/10/2013 07:34

Down I think what you have here is the corpus lutueum (the bit of the released egg casing that stays near the ovary pumping out progeterone when you are pregnant). It is perfectly normal and sometimes turns in to a harmless cyst. It normally goes away by itself. Just ask them to check for it the next time you are scanned.
Waves to all. Have my pre-op appointment over the phone today with St Mary's.

DownstairsMixUp · 11/10/2013 09:38

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ODB1515 · 11/10/2013 11:37

hi all. Really need some advice. Just found out I am pregnant. After lots of miscarriages in between son 1 and 2, I had my 2nd taking clean, steroids and progesterone. None of my results actually suggested I needed clexane but I was put on it anyway and my NK cells level was 18 which is just above normal so took them too. I saw a new gynae to discuss options a few months ago and he suggested I dont bother with steroids or clexane but now Im pregnant, I dont know what to do......

I wouldnt want to miscarry and not having taken anything but at the same time, dont want to take steroids etc if dont need them as they arent risk free either

anyone.....? I feel sick with worry now - the rollercoaster starts again

Bakingtins · 11/10/2013 13:52

OBD congratulations! You must feel a real mix of emotions at the moment. It's sad that the predominant emotion is anxiety but I think par for this course.

I'm on Prof Q's protocol for high NK cells - mine are 16% but that's on a uterine biopsy, not from blood, I don't know what the normals are for blood but mine were "high" rather than "very high" - which is

  1. Progesterone 400mg twice a day from day 21 until 12 completed weeks of pregnancy. I haven't found anything about any potential side effects with this other than it may artificially prop up a failing pregnancy, meaning a miscarriage happens later on than it otherwise might.
  2. Prednisolone 20mg once daily from a BFP. Quite a lot of minor side effects for you - I'm mainly having problems with insomnia and being hungry and thirsty. It is broken down by a placental enzyme so only gets to baby in very low levels and no known side effects. Babies born to mothers who had steroid treatment sometimes have problems with low birth weight or IUGR though not known if this is the steroids or the underlying problems with implantation. Growth scans recommended at 26 and 34 weeks. Prof Q's latest paper says that high uterine NK cells is actually just a marker for steroid deficiency at a cellular level in the endometrium and doesn't subscribe to the "NK cells are evil and attacked my baby" theory.
  3. Clexane 20mg once daily from when an intrauterine pregnancy is confirmed, nothing to do with it's anti-thrombotic effects as I have no diagnosed clotting issue, it is cytoprotective (protects cells) in the placenta. Possible side effects for you of bruising, injection site reactions, rarely can affect other blood cells.

I think having had a successful pregnancy on that regime you know what it means for you as an individual in terms of side effects. If you chose not to take them and then miscarried that would be hard to live with. The difficulty is you don't really know if your DS2 was ok because of the treatment protocol or in spite of it because of some other factor. A lot of these treatments have not had their impact properly assessed as yet. We all know the 70% figure for RMCers who then have a successful pregnancy with no intervention.
I've been told my chance of success on that protocol is 60%, which compared to a 0% success rate in my last 3 pregnancies seemed worth any risk involved.

Good luck deciding what to do (and getting your gynae's blessing)

ODB1515 · 11/10/2013 15:56

bakingtins thanks so much!

I started the prednislone (25mg) and started the progesterone (once day so might increase it to twice) and will do clexane tonight. He told me to start clexane now. I just want to fast forward 2 weeks when I can be scanned but trying to keep calm and forget about it to be honest

do you take aspirin too?

Lancashire21 · 11/10/2013 17:28

Popping on to say hello again..and hoping everyone is well.

Justonemoretime · 11/10/2013 17:40

Congratulations ODB!

Cursing the NHS 'system' today - so I have a full day of teaching and have arranged to do my pre-op over the phone at lunchtime. I also have minimal mobile phone signal in my office, so had given them my office land line and explicitly asked to be called on that. So, when I arrive back to my desk at lunchtime there are 5 missed calls from St Mary's and voicemail and one barely audible message, the only bits of which I can hear properly are the phone number to call back on and something about how my operation will be cancelled if they can't speak to me. Panic and foul language ensued as I tried to get through to the hospital switchboard (not at the operator, I hasten to add, just swearing in general into the air), which I can't access from the office phone as no key pad options, and getting cut off several times as I stand in my office with my head at a weird angle in the corner of the room, not daring to move in case I lost the signal. Eventually got through to gynae ward, they said it wasn't them that I needed to speak to. I cried on the phone. Eventually got through to right person - she's with another patient, can I wait? Well, yes, but only for next half hour or so as I have 30 teenagers waiting for me; please, please, please just write my land line number down? It's now all sorted but HONESTLY! why make an appointment to call on my land line and then call 2 hours earlier on my mobile? I can understand them overrunning late, but that was a clear case of not passing on the message properly. I was surprised how upset I was, but I guess I've been just accepting what needs to be done, and to told it might be cancelled for the sake of a missed phone call was just too much!

Sorry for the rant. I'm going to have a glass of wine tonight!

Waves to all. xx

Bakingtins · 11/10/2013 22:20

ODB not on aspirin this time - was on 75mg last pregnancy. Prof Q thinks if no clotting issue it is counterproductive and can interfere with implantation.

Justone that sounds so frustrating. Glad you got it sorted in the end.