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Conception

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TTC/ pregnancy on Prednisolone or similar part 3

993 replies

freelancegirl · 22/11/2011 16:20

For those who are TTC/pregnant undergoing immunotherapy treatment. Current list as it stands, do feel free to come and join us, it's moving quickly round here!:

Tuesday 22nd November

TTC
Waiting to test
Snoopygirl - V High NKC TTC, will be Ist try with Pred, Intralipids on bfp Testing from 21/11
Havingkittens - Upgraded from High to V High NKC TTC #1 after 2 month break/testing 29 Nov -2 Dec depending on my resolve.
Waiting to ovulate
coleyoz - V High NKC. TTC #2 - ov 3 Dec (Pred and Intralipids at BFP)
duggs1976 - High/V High NKC - TTC #1 - Superovulation cycle1
batteryhen - High activation NKC, factor v leiden. TTC#1
Suemays - V High NKC TTC/ov 30th Oct. TTC#2.
Cherrycheeks - V high NKC, TTC#2/ ov 25th-26th Nov/ 4th cycle of pred
pureequeen - High NKC TTC #2 again from November (BFP cycle one but mc)
eurochick - TTC#1 awaiting first appointment (in Nov)/ov expected 28-30 Nov.
BFPSeeker

BFP
2nd Trimester
Stogan - V high NKC - BFP 9/7/11 cycle#2- 24+3 Due 10/03/12 next scan 30/12
Digitalgirl - High NKC - BFP cycle#2 -19+1 Due 16/04/12 anomaly scan 23/11
Coconutfeet - V High NKC, Factor II gene mutation, underactive thyroid - BFP pre-pred, started at 6 weeks ? 16+1 next scan 14/12
Comedy - V High NKC - BFP cycle#2 - 13+3 due 26/5/12 next scan 12/12
Iggi - High NKC & Hypothyroidism - BFP cycle#2 - 12+6 anomaly scan Jan

1st Trimester
BrownieGecko - High NKC, Hypothyroidism, & Glucose Intolerant. BFP on cycle 3 of Clomid - 11+4 next scan 28/11
Scooterchaser - V High NKC - BFP cycle1 - 8+1 Due 01/07/12. Scan 25/11
Freelance - V High NKC TTC#1 Hydroxchloroquine, Pred, Intralipids. Thyroid/hashimotos. MC 1st cycle. LMP18/10 - 4+6 - Scan 3/12
Arianhod - V High NKC, MTHFR homo, hypothyroid, TTC#2 BFP 2nd pred cycle LMP19/10. 4+5 Scan 7/12
Cheerfulcharlie - V High NKC, MTHFR/TTC 1/ (metformin, intralipids, no pred). LMP17/10(Ov'd 3rd Nov) 4+5 Scan 6/12.
ChoccyPud - V High NKC / TTC #1 BFP 4th Pred cycle LMP20/10 4+4. Scan 3/12.

OP posts:
digitalgirl · 14/12/2011 23:19

free think i cross posted with you - hooray for another good scan. You do realise though that (holidays permitting) you can choose when to have your scans at both st m and with mr s. Obv you can only have them in weds at st m but if you want to have it every week or every three weeks that's up to you. They advise every two, but said if you're worried they'll do weekly. But v pleased to hear all is well at 8+ weeks. Just another week to get through now.

coconut congrats on team blue! Will you be picking a name before you meet him? And wonderful that all measured well today!!

duggs I had total nk cell count of 226.7 and activation of 1.25 - this was tested two weeks after an erpc at 8 weeks.

Was rather depressing flicking through all my medical papers that we filed. All that pain condensed into results printouts and doctors letters.

duggs1976 · 14/12/2011 21:41

RIGHT.. have been looking at stats and apart from the fact I have no idea what they mean apart from understanding the words count and activation..I was trying to find a pattern.

What I've done is listed us in order of count and then order of activation level and given us a position in our little cocoon group.

I've then given us a collective position number. Not sure the point of that but at least it makes it easier to identify ladies who are similar to us and more importantly those successful PG ladies.

Updated list:

Name/absolute count :
1Cheerful 473 and 2.11
2Arianhod 322 and 1.83 / 471 and 0.83 with 40mg pred
3eurochick 412 and 0.92
4Suemays 334.3 and 1.9
5Buster 272 and 4.11
6Duggs 165 and 1.79
7scooter 200 and 2.7
8ColeyOz 132 and 2.40
9Coconutfeet 130 and 3.32

Name/activation :
1Buster 272 and 4.11
2Coconutfeet 130 and 3.32
3scooter 200 and 2.7
4ColeyOz 132 and 2.40
5Cheerful 473 and 2.11
6Suemays 334.3 and 1.9
7Duggs 165 and 1.79
8eurochick 412 and 0.92
9Arianhod 322 and 1.83 / 471 and 0.83 with 40mg pred

Now pop yourself in position and once all have done (who want to) I will work out collective order.

Lovely x

ChoccyPud · 14/12/2011 21:28

Yay for more good scan news, very exciting. Knowing the sex must make it all so real.

free I can only repeat what Ari said. You'll know it's hard going through dates when xyz was due to happen, it's just a mc recovery stage. It's the flip side of the comfort of scans every other week in the first trimester that you get with the Pred regime, that post mc we get to Oh I'd have had intralipids this week. Absolutely nothing for you to feel awkward about.

The fact you're still going strong is what I concentrate on more, and that gives me hope that it'll work for me too. It's like dh keeps reminding me - it may be 5 mc in all (and the grief and emotion attached to 5) but its only (ha! Only! How battle hardened we are) one on the Pred.

Battery you sound very calm about the hcg. As you say what will be will be and there's nothing you can do about it except get tomorow's number and react accordingly. Fingers crossed.

Digi hope you get hold of your mum soon, and straighten it all out. Really feel for you.

Name/absolute count/activation
Arianhod 322 and 1.83 / 471 and 0.83 with 40mg pred
eurochick 412 and 0.92
Suemays 334.3 and 1.9
ColeyOz 132 and 2.40
Buster 272 and 4.11
scooter 200 and 2.7
Cheerful 473 and 2.11
Coconutfeet 130 and 3.32
ChoccyPud 247.1 and 2.11

Duggs do your stat thang!

Coconutfeet · 14/12/2011 21:16

Battery - we cross posted before. "In range" sounds good at this early stage. I really hope tomorrow's results are going the right way. You sound very calm and collected, too.

scooterchaser · 14/12/2011 20:12

Hooray for comedy and coconut great scan news (excited about one blue, one probably pink one!)

stogan did you find out what you're having?

Also massive hooray comedy for getting signed off, must feel like a massive vote of confidence so hope your confidence levels are rising too and maybe even some enjoyment of pregnancy can creep in now... perhaps?

And a bonus scan for free with happy measurements. Fantastic!

battery you sound amazingly grounded and calm about things, sorry you didn't have more conclusive results today but 'in range' sounds as hopeful as one reading on it's own can be. Fingers x for tomorrow's level.

Thanks for all the supportive messages about the family dramas, feel bad for them because they do try to get it right and last week were in fact brilliant with me. Its just they've moved on and I haven't. Thing is they haven't really met with anything like this before and I think mostly (as a youngest child) I am throwing my toys out of the pram because I am so angry that none of them have prepared me for all this. They made me think life was great and you grow up and have your children easy-peasy and life ticks on happily.... it's been a rude awakening is all I can say.

digi thinking of you and your mum and hope she has a change of heart soon, even if your Christmas can't be exactly how you pictured now. Will there be any time between shifts you can see her?

Ari levels are confusing aren't they. Agree with digi that your count was probably raised while it wasn't going well... I rang the midwives when I was bleeding saying please can I have my NK levels taken just to see what's going on and the one I spoke to said it would be pointless because my count would definitely be up if I were miscarrying. Not terribly helpful at the time, but there we are.

Completely irrelevant but just thought I'd share that DS asked for "cheese and pickle and frankincense" in his sandwiches today. CONFUSED at Christmas in this house!

eurochick · 14/12/2011 19:09

Yay, more good news!

Coconutfeet · 14/12/2011 18:51

Comedy ? Great news about being officially signed off and handed back to the NHS! I really hope the rest of your pregnancy is uneventful.

So sorry your family are being so unsupportive, Scooter. Sad Mc is such a lonely time, you?d really hope those closest to you could offer a place where you can be honest about how you?re feeling.

Sounds like you?re stuck in the middle of your parents as well Digi. It must be really hard juggling obligations when your parents are divorced.

Battery - I really hope you get some definite news soon. It's so difficult having to wait.

Well, I had my anomaly scan today. And thankfully all seems OK. I don't think I realised but I was actually getting very anxious about it. Baby was very active and is a boy! I'm really glad that someone (Stogan, I think?) made me remember to check the cleft palate as well.

Well, something has definitely suppressed my immune system as I've had a hideous cold that I haven't been able to shift for about 3 weeks now. I've now got really bad earache. I haven't had that since I was a child and I'd forgotten how horrible it is. Bath and very early night for me tonight, I think and maybe a celebratory glass of sherry.

Updated list:

Name/absolute count/activation
Arianhod 322 and 1.83 / 471 and 0.83 with 40mg pred
eurochick 412 and 0.92
Suemays 334.3 and 1.9
ColeyOz 132 and 2.40
Buster 272 and 4.11
scooter 200 and 2.7
Cheerful 473 and 2.11
Coconutfeet 130 and 3.32

batteryhen · 14/12/2011 18:49

Hello! Gosh you lot are chatty today! Hooray for good scans again, boo for insensitive families and friends. xxx

Just quickly - my hcg was 58 yesterday at what would have been 4+2 so not huge, but the lady said it is within range, and should be over 100 tomorrow when I test. We will see. I am not overly stressed about it - what will be will be, worrying won't change the outcome. I will let you know tomorrow xx

suemays · 14/12/2011 18:19

Duggs I am joining you in the superovulation programme so fingers crossed we will both be up the duff soon! I am starting in Jan. Louise said it can take up to 6 months to fall pregnant on the plan!

duggs1976 · 14/12/2011 18:17

Am on iPhone on train - I know my count was totally normal but my activation ( how aggressive and active the cells were ) was 1.79 boarder high/v high. But because my count was within the normal range I am only on the high programme 25mg pred and no intrallipids. Can't recall the normal
count number but will dig it out. Loving the new stat focus think I need to work on the spreadsheet and get that going again.
Interesting points - count v acrivation
Also unfussy womb people.

Will post later after my stat work.

Btw free must have missed u at st m was there for 2nd APA blood test first thing. Probably means nothing and outcome to take asprin which I'm doing anyway but not much hassle for me- may as well finish up with them.
On way home to get dh to inject me in the belly with my trigger shot of ovitrelle to get those eggs out and hatched then some
Shagggin' action before Grays anatomy box set. (only on season 1)

Good news scanning ladies GrinGrinGrin

suemays · 14/12/2011 18:15

Cheerful Dr S told me that anything under 200 was normal for the amount of NK cells and anything over 1.8 was in the v high category for the absolute count. I think they are both important but have no idea why! I seem to remember it is the activation one that is more important though - the treatment plan is slightly different between high and very high.

suemays · 14/12/2011 18:11

Comedy fantastic news you have been signed off and that you might have a pink one! How did your DD take the news?

Free another good scan so brilliant news too!

It is interesting to see the levels everyone is - I wonder if Dr S has a similar list of us all? He probably sits in his fake moustache and rain mac compiling them!

Cheerfulcharlie · 14/12/2011 18:07

Interesting that there is no correlation between the count and activation numbers. Does that mean one of them is meaningless I wonder?

Arianrhod · 14/12/2011 17:52

Just wondered actually, how many others have had a repeat NK test after being on pred? PQ you did, right, but has anyone else? If so, what effect did the steroids have on your levels? Just out of interest!

Arianrhod · 14/12/2011 17:49

argh, missed a couple off. Try again!

Name/absolute count/activation
Arianhod 322 and 1.83 / 471 and 0.83 with 40mg pred
eurochick 412 and 0.92
Suemays 334.3 and 1.9
ColeyOz 132 and 2.40
Buster 272 and 4.11
scooter 200 and 2.7
Cheerful 473 and 2.11

It is interesting to see what people's levels are at.

free Just read backwards through the posting .. don't feel sorry for the intralipid reminder, it's not down to you :) Truthfully I for one am really pleased you're doing so very well, it's not so much a reminder of where I should be as an indicator of where I can be, will be, in due course. And the St Mary's scan sounds excellent, so now you don't have to mental about being one day behind :) I do know what you mean about the double-edged sword but honestly, for me, seeing that some ladies even having MCd on Mr S's plan then went on (are going on) to have a successful pregnancy actually means a lot to me, it really does give me hope that it can happen for me too. Hope that makes sense. I really and truly want to hear about all the successes and step-by-step slow progress through pregnancy of all the ladies on here, it is so very encouraging.

Arianrhod · 14/12/2011 17:42

Egads, I'm home now and just checked what my original NK cell count was. Absolute count was originally 322.3 - and it's now 471? What on earth does that mean, why have they gone up so much?! And because I have so many more of them now, does that mean there's more attacking going on, even though overall they're less aggressive? Questions questions, all for Mr S on the 4th Jan!

So updating stats list:

Name/absolute count/activation
Arianhod 322 and 1.83 / 471 and 0.83 with 40mg pred
eurochick 412 and 0.92
Suemays 334.3 and 1.9
ColeyOz 132 and 2.40
Buster 272 and 4.11

eurochick · 14/12/2011 17:16

charlie that is the number I used for absolute count as it was the one mr S pointed out to me, but I am the most novice of all of us at this so I am not sure that it is the best NK cell indicator!

digitalgirl · 14/12/2011 16:50

Grrrr. Also wrote a post hours ago that I forgot to 'post' so have lost my message.

battery Its still early days, I'm pretty sure my lines were faint till at least a week after AF was due. Did you get your HCG number and will you be able to do a repeat test tomorrow to compare?

comedy hooray hooray for good scan and sign off! You so deserve to have your happy ending!!! [frgin]

scooter oh dear, I'm so sorry your family aren't being as supportive as they should. Recurrent miscarriage is really one of life's loneliest bereavements. You never ever get used to it Sad. I feel so sad for you that no-one other than your dad acknowledged your email about cancelling your birthday, it really doesn't take much effort to reply 'I understand and I am sorry'. I think what's important is that you do everything you can to protect and care for yourself over the next few weeks. If that means letting people down once in a while, then so be it. You have a very good excuse.

choccy sounds like things are getting back to normal for you,which is one less thing to worry about - but good that you don't have the pressure this month to do anything about it (although that kind of has the opposite effect on me, if someone says don't do something it makes me want to do it!)

PQ great idea - I will bring along my stash and divvy it up fair and square.
As for your academic question, I read on MN about reserach on implantation shags (ie sex around the time of implantation). Apparently it helps boost your chances of a bfp - something to do with the body recognising that your partner is still around and therefore more likely to help raise the baby.

ari interesting that activation is down but count is up. Perhaps the count is up because you were miscarrying - ie in a 'normal' miscarriage it's the nk cells that attack the pregnancy.

Think my mum has slunk off somewhere to lick her wounds as she's ignoring all calls, texts and FB messages. Even if she realised that she's cut off her nose to spite her face she can't unschedule these extra shifts she's signed up for now. So have accepted that she's probably happier working than she is spending christmas with us (although feeling a bit like the rejected child) and am now looking forward to a cosily intimate christmas with dh, ds, dsis and her dp. It'll be great.

Buster76 · 14/12/2011 16:50

Name/absolute count/activation
Arianhod 471 and 0.83
eurochick 412 and 0.92
Suemays 334.3 and 1.9
ColeyOz 132 and 2.40
Buster 272 and 4.11

scooter I find family and friends can be insensitive because they dont know how to cope with it, so brush it under the carpet so they dont have to deal with it or talk about it. I dont know about you but I want to talk about it, I'm not embarassed about it, its a huge thing to happen to anyone. I just think RL people would never really truely understand unless it happened to them.

Hope your scan went well comedy.

xx

Cheerfulcharlie · 14/12/2011 16:46

Interestingly I have also been experiencing a bit of buzzing in my left hand in the past couple of weeks on and off but only very mildly. I am not even on the pred! i wonder if this is also an effect of the intralipids? or something entirely different (including the possibility of my imagination).

free these measurements can really be a bit out depending on the machine they use. Yesterday my doc measurement me at 6 w 5 days. I freaked out then she said it might be in a funny position and the machine was not the highest resoultion. Then she shifted it a bit and managed to measure 7 wks 3 days. I was still not convinced so kindly she let me have a sneaky go on the better machine used for NT scans which showed it very clearly and measured 7 wks 5 days which was spot on i thought. When they have a crap machine, they are more likely to measure it smaller i think because the outline is fuzzy and they can't always see the the outer edge of the baby/ fetus thing.

Cheerfulcharlie · 14/12/2011 16:36

Yay Comedy! Glad to hear you've been signed off. I love hearing these good second and third trimester stages particularly. It gives us all hope.

scooter cannot believe your sister said, or even thought that. It's funny that with some people it's like they get fed up of sympathy after the first one and expect you to snap back quickly. Why would the fourth m/c be any easier than the first?

Which Absolute Count are we quoting here? On my results sheet I have one that says 'total NK absolute count' and one that says 'NK (dim) absolute count'. I have assumed it is the former, if not let me know and I will change my results:

Name/absolute count/activation
Arianhod 471 and 0.83
eurochick 412 and 0.92
Suemays 334.3 and 1.9
ColeyOz 132 and 2.40
scooter 200 and 2.7
Cheerful 473 and 2.11

freelancegirl · 14/12/2011 16:35

Aggh! I just can?t keep up! So busy here.

The list is an old one at the top of the page as the thread always keeps the opening comment in place. When we do a new thread we can make sure not to have the list on it. I never see it as I always go straight to ?threads I am on?. We are probably about to chat ourselves to close to 1000 posts again soon anyway.

First of all been keeping an eye out for battery?s updates. So sorry you are in limbo. I have heard that tests done in hospital are not actually always as string as say FMU ones.

Sorry too to be the reminder for Choccy and Ari about intralipids. I have said this before but I too have miscarriaed when others have gone on to stay pregnant and it?s so strange seeing where I would have been. Of course there is time yet for me to miscarry as well. I guess the great thing about having us all here together is it is incredible to have all the support, but it is also going to remind us of what can go right and what can go wrong. It's good to bear in mind for all of us what can go right! But I know I personally, at this crucial stage, keep thinking of all the stories of it having gone wrong at 8-9 weeks, particularly with Scooter. So having all our stories together is a double edged sword! But, in the main a supportive and constructive one of course.

I felt really tired yestrday evening and was actually in bed by 10pm, not sure if it was the intralipids or just the whole bloody day. I had 9 hours sleep though so think that helped. Not feeling bad at all today (cue lots of mentalling!).

In answer to your other question Choccy my cycle was back on track four weeks to the day I started bleeding on my Pred MC (I started bleeding a few days before ERPC). Hope yours is going to be nice and regular too.

A bit shocked on your behalf about the attitude from your family Scooter. What a rotten thing for you to have to contend with. I got the Moonface thing after coming off the Pred after MC too! And also that vibrating thing in my lip. It first manifested itself in my bum which was really really strange. I thought I was sitting on a mobile phone.

I am a bit confused about the NK cells count and absolute count thing, but will have a look at my letters and see what I can find. I know he was concerned about my levels being so high but I only remember the 3.79 figure. Vey interesting to see yours did actually go down to an almost normal level Ari!

Oh, just looked at the letters I have from him and it only gives me the 3.79 figure. I wonder if I can get it from the clinic.

A huge virtual hug to Comedy for coming off the treatment!!! Oh my gosh, you have graduated from Mr S? school of hard core drug action!! It?s incredibly brilliant and so inspiring for us all to see. Team Possible Pink sounds beautiful. What a milestone.

I have actually had another scan myself today. It was the appointment at St Mary's, scheduled a few weeks ago. I wanted to keep it as I didn't want to fall of their list but I felt nervous and tempting fate to go again. My ideal would be to have Mr S one week and St Mary's the next but due to Xmas dates that is not going to happen. Anyway, heartbeat still there and measuring 8.3 according to them (Digi you were right in telling me that Mr S measures slightly smaller. They want to see me again on the 4th Jan. So until the 23rd Dec (a week on Friday) that's it for scans for me, unless something goes wrong of course.

Like I said, feeling remarkably unpregnant today. Sigh. I know I know, symptoms come and go. Am off out to meet my 'miscarriage friends', met here on mn when we were all going through the same thing. So it will be good to have tea and cake and again the sort of real conversation I can have with you ladies too.

Really hope everyone is ok today and hopeful for good news from Battery.

OP posts:
eurochick · 14/12/2011 16:07

Comedy it's great that you have been signed off!

Choccy I agree with Arian. It doesn't sound uncharitable at all. It is not unreasonable to expect a little sensitivity from friends and family over an mc.

Arianrhod · 14/12/2011 15:48

Woohoo comedy, that's fabulous news!!! Marvellous you've been signed off, that's brilliant.

Agree with everything you say choccy, and you don't sound uncharitable at all. I stand by what I said, a miscarriage is a bereavement, and should be treated as such - with sensitivity and sympathy, and most certainly by one's nearest and dearests.

Comedyworks · 14/12/2011 15:40

Hi all - really feel for you regarding relatives and understand what you are saying Choccy - so sorry scooter that they are not being more understanding - it is such a horrible time as miscarriages aren't merely physical they are wrapped up in hopes and dreams and it takes time and energy to rebuild these. For people on this thread this has happened over and over again and you deserve so much more support and encouragement than you are getting. Hope we can all compensate for that a bit.

I saw mr S today and am now officially signed off and joy of joys can stop the night time insertions of cyclogest. Scan all fine, took DD so she could see new baby brother/sister and Mr S thinks sister although very inconclusive and so won't be buying anything pink until after the twenty week scan!

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