TTC/ pregnancy on Prednisolone or similar part 2

[Arianrhod]

Starting up part 2 of this thread since the old one closed at 1000 posts!

iggi lots of luck for today, hope it's nothing - I know it doesn't help but I know lots of women have spotting and/or bleeding in pregnancy and it still goes ok. Definitely call the EPU, get scanned - it's worth it, honestly, at least you will know one way or another. Virtual hugs coming your way.

free I also started AF properly this morning, so looks like we may be both importuning a friendly witch for a good fertility spell on Hallowe'en? I know exactly what you mean about the scary stuff ... a small part of me was actually sort of relieved when I didn't get a BFP purely because it means I don't have to go through the whole worrying about miscarrying all over again. Bizarre, but there it is.

[Havingkittens]

Coconut - I didn't have a question about re-testing, I was trying to relate my own experience to someone else's question about re-testing!

As far as feeling miserable, unfortunately I think that's going to be the case for a good while and get a lot worse. The situation with my mum is making me so sad. I was just on the phone to her and she was telling me that the friends that visited her today stayed for 2 hours (she gets pretty tired out after an hour), but she didn't have the heart to ask them to leave because they were going back to the UK until next spring and inferred that this might be the last time they see her .

The good thing though, is that I learned at my appointment that it's fine to fly until 34 weeks so that's a big relief to know that if I do get pregnant it won't stop me spending as much time as I need to in France.

Coconut - I'm not far behind you, I'm nearly 42.

[scooterchaser]

kittens sorry to hear you've been feeling down, sounds at least they are properly on your case now and I hope your referral comes in really soon.

You're right, they do have a lot of us to deal with, and the lady I spoke to was probably having a bad day because she was just covering for the midwifery team for a couple of days and I would imagine I was one of many calls she had to field.

What is so hard is that I don't trust anyone to get it right anymore, I don't trust results to get communicated and I feel if I don't push at all the doors when I have a hunch something isn't being done, I will let this baby down too. I'm frightened it is already too late and I should have rung up to ask about my results before ttc. And dash it, yesterday I was doing so well.

snoopy thanks for the breakdown, that's really helpful knowing he gave you those figures directly. Scary to be falling into very high now, but I know I am in good company here. There I was thinking my levels had fallen and maybe I didn't need all this treatment at all! I guess that the 40mg pred has more side-effects but at the moment I'm just desperate to be taking enough and I will proudly bear a moon-face for the privilege.

choccy do you mind giving me the Epsom EPU extension if you have it to hand, I might as well book these scans in and hope for the best.

ari good point, we can only do this one little step at a time. I should be grateful that today is another day ticked off the process and just stop fretting.

[scooterchaser]

kittens must be tough trying to stay positive on so many counts and being strong for your mum all the time. You must be a real comfort to her and sound like a pretty amazing daughter to me! Do you share what you are going through with her? Glad that you have the OK to fly out and be with her, must be a little weight at least off your mind.

[ChoccyPud]

Scooter - pm'd you the numbers.

Kittens - so sorry about your mum, it must be hard being away from her.

Finally, as we all seem to be coming out with our ages, I'm 36.

[iggi999]

Havingkittens, I'm so sorry things ate so tough for you. It must be good for your mother to have you to lean on, I hope you have someone in RL too to do the same for you. That you've been able to spend time with her will, in the long run, mean a lot to you I think.
Thank you for the advice re scans. I wonder, when they were talking about fortnightly scans, do you know how many weeks they meant up to? I have my booking in (ha ha) appt tomorrow so could raise it then.

[Havingkittens]

Thank you scooter, what a lovely thing to say! I have quite a small family so am quite close to all those on my mum's side. My Dad I've not seem much over the years but we talk often on the phone and he is going through some awful stuff at the moment too having just lost his wife. I am really open with all of my family about what's been going on, pretty much from the off set so I tend to tell them as soon as I even get pregnant! Often I am around them soon after a BFP and they are suspicious if I don't drink or eat certain things so it would be hard to keep anything from them anyway. I wouldn't want to though. I count on their support when I need it and they are with me every step of the way. This afternoon I have already had my auntie on Skype asking how my appointment went, and had a conversation with my mum about it.

Yes, the flying thing is a big weight off my mind. I was really getting worried about being in a situation where I couldn't spend crucial time with my mum, especially further down the line in terms of her illness. I only hope/wish that she is still around to meet a grandchild but I fear that might be too much to hope for given the odds.

By the way Scooter I hope you don't think I was being cold by my comments about Dr S's colleague. Just trying to see it from a different perspective. The ladies I usually speak to at St Helier are usually really kind and helpful, and quite patient too usually. Perhaps you caught her on a bad day. I think Dr S is away so she may be overwhelmed with dealing with people in his absence. Why don't you have a chat with Annabel, his PA?

[Stogan]

Just quickly checking and lurking. Hope everyone is well xxx

[digitalgirl]

Been lurking too but I see congrats and hand holding are in order for scooter! Well done on clearing the first hurdle. I hope you get those answers re your new nkc reading, it does seem like you would be eligible for treatment for v high nkc - but you'll need a prescription for this so either way someone needs to look at your results and sort you out. Fwiw I wasn't retested on bfp, although I got pg within 4-5 months of my test so perhaps that's why.

kittens glad they're reffering you to the fertility clinic - hopefully the law of sod will kick in and you will turn up for tests already pregnant. Sorry to hear the misery feel never ending. Scooter's right, you are an amazing daughter. I hope you're allowing yourself to laugh and smile at silly things in between the seriousness of everything else.

snoopy welcome and good luck with starting ttc!

On the working with children link - I'm not a teacher, but I do work in kids tv so maybe the power of just thinking about kids has the ability to up your nkc count! Actually I've just always had a rock hard immune system - and I think you probably end up developing one working with snot-nosed kids or with sick coughing patients.

Had a doc appt at the AN clinic - other than a GTT at 26 weeks I won't need any further appointments other than the normal ones. From now on this is a normal pregnancy? Would you believe it!
An extra bonus - doc got the doppler out and we heard the hb. Little one was in the perfect spot for a nice clear hb and then immediately swam away, then she found it again. So another doppler dodger like ds was.

Right - who's next up for a scan? I'm beginning to think we may need a list. One for the ttc'ers so we can all help symptom spot till poas-time and one the for bfp'ers so we can gather for hand holding around scan time.

Could go something like this...

TTC
Name high/v high nkc cd#/ucl# #dpo

BFP
Digitalgirl 15+1 Due 16/04/12 next scan 7/11

But TOTALLY understand if you all think it's a bad idea - just thought with so many of us would be nice to see how many are actually pregnant on the treatment and how many are ttc.

[freelancegirl]

Lurking on the train to Liverpool so no time to post properly but I was thinking about a list too, just as I keep getting confused as to who is pregnant and who is doing what. Will add my details later or tomorrow

[Coconutfeet]

Sorry Kittens, I'm getting in a muddle!! I know someone asked the question about retesting and I'm tired (I blame that bloody pred and cannot wait for a full night's sleep). [hconfused]

It must be a massive weight off your mind to know that you're able to fly until so late into the pregnancy and will be able to spend time with your mum. Really glad you've got family to offload to as well as you've got so much to deal with at the moment, you must feel like you've got the world on your shoulders.

I think the idea of a list is a good one. There are so many of us now and it is getting confusing. Will add my details if other people agree.

Scooter - I totally understand your concern about people not getting things right. After some rubbish experiences with hospital communication I feel the same, and this is so crucial you have to feel like people are doing things right. Good luck following it up.

Have a good trip Freelance.

[ChoccyPud]

List fine by me. Good idea given all the pg brains/Pred brains here! Tech question tho: do we need to type it every post or is there a quick way to do it?

V high nkc / cd6

[snoopygirl]

Hey was just in bath having hubby de-nit mine and sons hair!!! (hope that hasn't put you off your dinner!) and was thinking try as I might I can't keep up with you all and would hate to offend anyone by sayin something insensitive not knowing history etc
so yes up for a list. will add tomorrow.
what's cd/ucl thou?

[Havingkittens]

I think the easiest way is to copy and paste and add yours on until we have a comprehensive list. Might be tricky keeping the CD/DPO etc up to day though!


TTC
ChoccyPud - V high nkc / cd6
Havingkittens - High NKC TTC again from November

BFP
Digitalgirl 15+1 Due 16/04/12 next scan 7/11

On the "Recurent Buns" thread the stats are a little more detailed. Not sure if you want to go that route or just keep it simple? If you want more info though someone's going to have to tell me where the hell the hash key is on my MacBook 'cos I'm buggered if I can find it!

[digitalgirl]

Oh good I haven't completely offended everyone! I was thinking to keep the list a little simpler than the recurrent buns one as that's quite a hefty one and isn't something that's easy to update daily. Of course people are welcome to put as much detail as they like (how many dc they have, how many mc they've had, what extra treatment they're on) - but didn't want anyone to feel they had to put their history down if they didn't want a daily reminder. The pg lot don't even have to put a due date down if they feel that's too much. Whatever works for everyone!

[freelancegirl]

Maybe a BFP date would be more comfortable for some of the pregnant ones if not yet ready to put an EDD? But great if you all feel up to an EDD! Here's myself added. Hello Kittens too, sorry you are feeling a bit low. You have so much to deal with at the moment. Ooh Snoopy I had nits several times as a child in Spain (not sure if being in SPain had anything to do with it but it felt at times it was rife!). I used to be quite expert at spotting them in others :) CD is Cycle Day - ie from CD1 the first day of proper period. UCL is usual cycle length (I think).

Ok here's the list:

TTC
ChoccyPud - V high nkc / cd6
Havingkittens - High NKC TTC again from November
Freelancegirl - V High NKC TTC again from 1st Nov. AF due approx Nov 16th.

BFP
Digitalgirl 15+1 Due 16/04/12 next scan 7/11

Feel free to add to it y'all! It will be great to be able to glance back to ensure we know where each other is at.

[freelancegirl]

PS Kittens hash on the Mac is Alt 3 :) #####

[Cheerfulcharlie]

Hello everyone! Great idea to do a list, I can't keep up with us all either. I'm writing this from the phone so can't copy and paste the list but would someone be able to add me as ttc with ov due around 5th nov. V high nk cells ( will only be taking intralipids plus acupuncture)

Has anyone got the actual copy of their results? When my gynae (who is a recurrent miscarriage specialist) saw my nk results from Dr S she was 'hmmm , that's strange there is no reference range printed on there'. (she's open minded and would let me do the pred under her if i wanted too but is not exactly enthused by it all). This got me looking at my results again. I was told by Dr S as my activation absolute count was 2.11 I was 'in the champions league' yet there is no reference range mentioning this on the results. Not saying he's not right by the way. But on the line under that it says' total cd 69 cells 0.45% ' and below that it says that normal is less than 1%. Does that mean I'm normal or is that a completely different result? I don't know I guess I'm just a teensy bit suspicious that it seems almost everyone has a nk cell level that needs treatment. Am I being too cynical?

Great to hear the pregnant ones are doing well and fingers crossed to all those ttc this cycle!

[freelancegirl]

Here we go, have added Cheerful. Don't ask me why I am awake this early when I don't have to be and am not on bloody Pred!

Cheerful I don't have the copy of my results with me but I really want to check them out now. I seem to remember there being a normal range on there but then there not actually being a percentage like you have! I know he said I am in the top 5% of people he sees, which is obviously not so good. Hence the new treatment after the last time didn't work. I guess we have all had those suspicions too but I do know of a friend who has just been to see him and was not diagnosed with high NK cells. But there is never just one way of looking at things, particularly with experimental treatment. It's just one person's research and opinion against another's sometimes I think. So we have to go with what we feel is right for us.

I have completely forgotten about acupuncture. Maybe I should make time to get back there, what does everyone think?

List:

TTC
Cheerfulcharlie V High NKC (intralipids on BFP, no Pred) TTC/ov 5th Nov.
ChoccyPud - V High KNC / cd7
Havingkittens - High NKC TTC again from November
Freelance - V High NKC TTC/ov 1st Nov. Trying new drugs & Pred.

BFP
Digitalgirl 15+1 Due 16/04/12 next scan 7/11

[Arianrhod]

Morning all, how are you all doing this morning? Supposed to be taking DD to a Hallowe'en fancy dress/pumpkin carving thingy (outdoors!) this afternoon and it's bloomin' raining :(

Adding me into the list:

TTC
Cheerfulcharlie V High NKC (intralipids on BFP, no Pred) TTC/ov 5th Nov.
ChoccyPud - V High KNC / cd7
Havingkittens - High NKC TTC again from November
Freelance - V High NKC TTC/ov 1st Nov. Trying new drugs & Pred.
Arianrhod - v High NKC TTC/cd9/ov 1st Nov

BFP
Digitalgirl 15+1 Due 16/04/12 next scan 7/11


I have my results here, and there are no reference ranges printed on the lab's 'special pathology' section covering CD69 - CD56 - CD16 tests. Mr S hand-wrote some ranges; for "Total NK Cell Absolute Count" under the "Natural Killer Cells Count" section he wrote "< 200 normal" (mine was 322.3) and for "[Lymphocytes] total NK [%]" he wronte "< 12% normal" (mine was 15.9%). Under the "Activation Marker of Natural Killer Cells" (which Mr S said were the important figures), again he just hand-wrote the ranges for Borderline High (0.8 - 0.99), High (1 - 1.8) and V. High (> 1.8) next to "Total NK CD69 Absolute Count" (mine was 1.83). That was it.

Perhaps there's no printed reference range because it's not an established definite yet? As in, the lab isn't going to make recommendations because there are no set guidelines as yet? Just a thought.

[Arianrhod]

Whoops, meant to say, I'm doing acupuncture free ... was recommended to me by three of the BC board members, and I swear that's what kicked my cycles back into normality straight after this last MC. Before then, since my first MC Dec/Jan this year my cycles have been all over the place, but 1st proper cycle after MC this time my cycle was straight back to it's usual 14/28, which it hasn't been since before I was first pg this time last year. I'm sure it was the acupuncture that regulated things, and I'm definitely carrying on with it. YMMV, of course! :)

[snoopygirl]

Morning here's mine added:

TTC
Cheerfulcharlie V High NKC (intralipids on BFP, no Pred) TTC/ov 5th Nov.
ChoccyPud - V High KNC / cd7
Havingkittens - High NKC TTC again from November
Freelance - V High NKC TTC/ov 1st Nov. Trying new drugs & Pred.
Arianrhod - v High NKC TTC/cd9/ov 1st Nov
Snoopygirl - V High NKC TTC/ov 16 Nov ish/will be Ist try with Pred Itralipids

BFP
Digitalgirl 15+1 Due 16/04/12 next scan 7/11

Maybe we've all got pretty high counts due to all the stress of this. I know the five times I have miscarried have all been in last 3 years when building our house and another next door, financially I never been so worried in my life, lived in caravan on site 4 14 months and nearly lost our plot of land because our mortgage was throu an Icelandic bank which went bust! So as a friend said maybe the time wasn't right before anyway.
Is there any research into stress levels and NK cell counts?! There are a few on BC board with borderline results and apparently Dr S treats them anyway as he believes the pred helps conception - that what I read anyway.

[scooterchaser]

Adding myself..


TTC
Cheerfulcharlie V High NKC (intralipids on BFP, no Pred) TTC/ov 5th Nov.
ChoccyPud - V High KNC / cd7
Havingkittens - High NKC TTC again from November
Freelance - V High NKC TTC/ov 1st Nov. Trying new drugs & Pred.
Arianrhod - v High NKC TTC/cd9/ov 1st Nov
Snoopygirl - V High NKC TTC/ov 16 Nov ish/will be Ist try with Pred Itralipids

BFP
Digitalgirl 15+1 Due 16/04/12 next scan 7/11
Scooterchaser 4+3. Due 01/07/12. Scan in two weeks

kittens didn't think your comments were cold at all, needed a voice of reason, I am usually much more forgiving of people and it wasn't her fault it was just that I was so frustrated she didn't understand how important it all is. Do you think Annabel is the right person to speak to? I could leave her a message but I don't want to be a nuisance and maybe she can't tell me anything either?

snoopy sounds like its been a really tough time for you, I hope things are looking up now with your house situation. I don't think there is an exact link between stress and NKC because mine have soared between July and October and although I've been quite ill in that time I haven't been as stressed as I was when my first lot of tests were done. I will ask the question though when I next get the opportunity.

ari happy pumpkin carving - hope the rain holds off soon!

[Comedyworks]

Morning all - like the idea of a list as our little community grows! Sorry can't cut and paste properly on iPad would someone mind adding me in please
Comedy 8+5 due 1/6/12 scan 2/11. Thank you.
I have also wondered about the link between stress and high NK cells - I was very lucky and had a son then daughter eighteen months apart with absolutely no problems and it was only when TTC after DSs death that I then had six miscarriages - I do wonder if it was just that I'm getting older and autoimmune problems get worse or whether life events can cause NK increases?
Separate question (more side effects I'm afraid!) - is anyone becoming more sugar intolerant on the meds? I have had some shakiness after sugary foods and am very thirsty all the time.
As Halloween draws near a big good luck to all those TTC! Cropped tops at the ready ....

[Arianrhod]

Here you go, adding in Comedy

TTC
Cheerfulcharlie V High NKC (intralipids on BFP, no Pred) TTC/ov 5th Nov.
ChoccyPud - V High KNC / cd7
Havingkittens - High NKC TTC again from November
Freelance - V High NKC TTC/ov 1st Nov. Trying new drugs & Pred.
Arianrhod - v High NKC TTC/cd9/ov 1st Nov
Snoopygirl - V High NKC TTC/ov 16 Nov ish/will be Ist try with Pred Itralipids

BFP
Digitalgirl 15+1 Due 16/04/12 next scan 7/11
Scooterchaser 4+3. Due 01/07/12. Scan in two weeks
Comedy 8+5 due 1/6/12 scan 2/11

Well I wondered about that stress thing, but don't think it applies in my case ... I was stressed to the hilt for some years before DD was born (due to ex-hubby), but still managed to get pg by pure accident and no problems at all during the pregnancy. Mr S told me that having a baby can often trigger high NK cells (and incidentally hypothyroidism), so it's very likely that my DD actually "caused" my high NK cells. Who knows ...

[ChoccyPud]

Duly copied and pasted below Blue Peter stylee with iPad - not easy!

I've always read that stress affects conception/ implantation but whether that is due to stress causing increased NK cells therefore more chance of zapping it before implantation or early on, I don't know.

Comedy I had a monster thirst when I was pg earlier this year and only got shaky or icky when I hadn't eaten for a while. If you keep eating little and often that might help morning sickness as well as regulate sugar if that's the issue?

TTC
Cheerfulcharlie V High NKC (intralipids on BFP, no Pred) TTC/ov 5th Nov.
ChoccyPud - V High NKC / cd7/ov 3rd Nov
Havingkittens - High NKC TTC again from November
Freelance - V High NKC TTC/ov 1st Nov. Trying new drugs & Pred.
Arianrhod - v High NKC TTC/cd9/ov 1st Nov
Snoopygirl - V High NKC TTC/ov 16 Nov ish/will be Ist try with Pred Itralipids

BFP
Digitalgirl 15+1 Due 16/04/12 next scan 7/11
Scooterchaser 4+3. Due 01/07/12. Scan in two weeks
Comedy 8+5 due 1/6/12 scan 2/11