Immune / natural killer cell treatment when ttc or pregnant (aka the 15th pred thread)

[sunnyday01]

This is a thread for those diagnosed with high or very high natural killer cells and trying to concieve or are pregnant and taking steroids/intralipids etc

Newcomers very welcome

Trying - I've been wondering where you've been. Wow sounds like you have a lot going on and a lot to think about BUT at least you have some answers all of which will help towards getting you a baby - I'm sure of it!

Are you doing ivf privately or nhs?

Our third sperm analysis has been lost again!

We get one cycle nhs wise. I'm happy to give them 2 goes before I move somewhere like argc which has good rates but sound like a mad clinic which would mean giving up ur life and living in London...I just want to stay as postuve as I can...hence less forums for me (after today!). I'm dreading the scans the pain the injections and how to do it all with work. I'm petrified this is going to be a 5 year long journey and I'm never going to get there in the end. I've just eaten a bag of mini eggs to feel better and now feel sick!

How was it gone missing again?! How frustrating! Def chase it up, I'm glad u didn't do SO as I wouldn't have gotten preg with it knowing wot I know now...so def make sure that's not delaying ur bfp...

I must say we both so shocked-3 preg in one year and his count is really low. It's not ridiculously low though but falls into male infertility needing isci.
Honestly I might go mad with all this! Glad I'm getting all the other tests done too...the miscariage world with ivf is a lot more advanced than the non ivf world. They do NK cells after 2/3 implantatiom failures or miscarriahes at my clinic and they knew of Mr s....so I'll be on the same tx plan more or less....

Really, sometimes I think I should just give up.

trying it will happen for you, don't give up! I think you are closer than ever now with this news as it means the problems are going to be addressed. Well done for keeping going! I am sending lots of positive thoughts.
I am 23 weeks now so have passed the half way mark. In bed with laryngitis though which is a pain... Can't believe I am complaining about a sore throat after everything. Sending you all lots of love!

Thanks girls. Ugh it's a rough road. I was worried I had developed some weird secondary unexplained infertility which would mean ivf would fail...or that I was having mega early miscarriahes...at least I know its a straight fwd sperm
Problem. And hopefully my uterus is ok and will accept an embryo. (Obv I don't know this but I have to think postive right?!)

Hope so glad all going well! Sorry u poorly! Have u chosen some names

Sorry i ve been awol girls just got back from skiing and work is hellish busy.

Lillies so sorry for such a difficult experience. Sending hugs and hope you are recovering well.

Gosh Trying - what a bombshell for you and your dh. I guess at least it gives u some answers. Don t give up, your derserve this and you will get there. Is your dh on plenty of vits ? zita west do some good ones in their boost range with extra antioxids, expensive but sperm can really be improved with supplements/lifestyle stuff so maybe worth it in prep for ivf (i think sperm have a similar 90 day developement).

Sunny preg announcements can be so hard. Hang in there.

Afm - cd1. Humira is sitting in the fridge so time to stop being a wus and take it .....!

Trying .. You HAVE to see this as useful. I can so relate to how you feel with more 'bad news' but nothing has changed in reality, you just know more so can now increase your changes of success by getting taken care of for the whole process. Of course none of us wanted any interventions, but if that's what we need, we may as well look on the bright side that at least we will have the best chances we can get and more care WHEN we do fall preg. You've time on your side so consider even a month or so for yourselves. As you know, I wish I had that luxury but still waiting on IVF appointment anyway. Does NHS pay for first cycle no matter where you live.. As long as you're under 40?
Hope- always lovely to hear from you and that all is well :)
Sunny - hope they find these results- that's terrible!! My DH was told his were normal but on the low side of normal. He was given nothing in writing so asking him to get results emailed as now worried.
I hope you all have a very lovely Easter weekend.. You deserve it more than anyone - especially Lillies, but everyone of you as I know bad days continue to hit- sometimes for no reason- even after months.. But they get fewer and also more spread out. I remember someone telling me it does get easier.. And she was right .. But she had also given up completely and was in her early 40s having a long holiday in NZ.. She then fell pregnant naturally and with no intervention had a perfect wee boy. We need to find ways to relax and hope, without being anxious. Easier said than done, but not impossible. X

Thanks hula and rosa. Yep he's already on every vitamin going and massively reduced alcohol after xmas. I can only presume they were shocking before!?
Rosa ur right. I think I'm just feeling overwhelmed the appt was 2 hours in total and lots Of talks of needles and injections and time of work. But I'm getting more miscarriage testing than already have which can only be a good thing. And I'll be on mr s plan too so here's hoping to it working. Plus no Tavel to london! They will do it for me all here and give me intralipids at home. I also suppose instead of waiting every month for a bfp at least now it's going to be speeded up. If I fail, well then I take a holiday and I start again! Once cycle has to work one day!? I think I just feel like its a double whammy? And today I'm feeling a bit fragile and like its the world saying - give up! U have too many issues!

Rosa-if there is a problem identified then U can get a cycle funded on nhs if under 42 (I think) If no problem (unexplained) I think u have to have been trying for 2 years (for under 35). If u look up for local ccg ivf guidlienes u can easily find them. Sadly NICE say everyone should get 3 on the NHS. But some areas give none or only one. And they all have different requirements-postcode lottery sadly. I found my ccg guidelines easily on Google. (I think Scotland has ccgs?) but just type in ur county and ivf guidlelines and it should Come up! I hope u don't need it though. Xx night (if I manage
To sleep!)

Thanks Trying. Hope you sleep well and feel less overwhelmed tomorrow.. You'll be absolutely fine and it's totally understandable you feel how you do today. I also hope I sleep .. Day 7 pred so no great hopes there. Can always research IVF in Edinburgh if not! X

Hi rosa, how are you feeling this month? Will you test on day 10 or leave it a bit? Hope all well.

Hi Hope- I'm ok but not feeling in the slightest bit pregnant. In fact don't remember any ov symptoms never mind any preg symptoms. I guess pred could mask them bit almost got it into my head I've got to try IVF. I think I need to pay no matter what here even before 40- that what seems to say online and still waiting for referral to come through. My cycle is usually 31 so testing on day 22 seems crazy as had the SO injection on day 11. I guess I will though so have some reason to stop pred which is not letting me sleep. I'm ok I guess but had a melt down last night and was upset at DH that we didn't try sooner and just feeling a bit bad now and sorry for myself. It happens from time to time and I am trying to convince myself it is better to have meltdowns now and then than none and then a proper breakdown - which must be a risk after all this when you have a full on job..
Anyway - sorry for getting dark. Glad you keep bring the light and hope :) happy Easter xxx

Hi ladies, sorry not been on for a while...spent all of last wknd celebrating (drank and ate far too much) despite a crappy cold (which has finally gone..nearly 3 weeks...and I have an aggressive immune system...Err) and then been mental at work and now driving off to catch a boat for a few days in the Emerald Isle (dh driving).

Trying - am sure you are feeling she'll shocked and trying to deal with your emotions etc but once the dust has settled I am sure you will gain some clarity and get your energy back to deal with the next steps. I know it doesn't feel like it but I think it's great you have more answers. How is dh dealing with it? Who are you getting your hla and lad testing with? I'm sending you big hugs...you will get your baby I know it! (Ps there are some supplements/vits called fertilisan (come from Germany) that are supposed to be very good for male fertility. It won't help with every sperm issue but always good to do all you can.

Sunny glad you got a nutrition appointment booked! Think you'll find it useful. Can't believe they've lost she test! I would go mental!!

Lovely to hear from you hope!! You really are giving me errr hope ;) it's so exciting!!

Hey there hula...is humira and injection?? If so can dh do? I hope you had a lovely ski trip and feel rested?

Drttv have a fab time in Japan and China, always wanted to go especially Japan!

How you holding up lollies? I hope you have some family time this Easter and are being kind to yourself?

Rosa sorry about your meltdown - huge hugs think of it as a good release of emotions. I don't think the pred helps imho and seems crazy we need to be relaxed to concueve yet pred makes is tired stressy anxious (and for me mental) I know it's easier said we have to try and not have regrets about what's happened or worry about missing opportunities or things we can't control (wow maybe meditation thins meditation thing is working...or someone has stolen my phone?!) but stay positive, there are so so many positive stories out there at all ages and issues! And options...if it's something you would consider (Ivf) I would enquire so you feel in control/making progress. I hope you have something nice planned for the weekend?

My £250 worth of supplements arrived this week...feel like an experiment though so keeping my fingers crossed this all helps!

Apologies if I've missed anyone!

Happy Easter all, stay positive

Xxxxxxxxxxxxxxx

Thanks Determined - virtual hugs much appreciated. Feel need more now.. Having tough time. As ever things happen when it's holidays.. Long Easter weekend, Louise away for a week and Mr S out the country. I'm only on day 26 but my day 10 of pred (Sun) I tested + with a clear blue and again yesterday (day 11). BUT today with a cheapy I tested neg. no idea what is going on and if to keep taking pred, start cyclogest and arrange intralipids. I managed to see gp and got a faint positive urine test an hour ago and will get hcg blood test results back tomorrow- need to go Thursday to see if doubling. I've twinges on left side and very slight occasional spotting. Guessing its prob bad news (but then I don't know what good news feels like!) should I take pred tomorrow and progesterone tonight? Does anyone think this sounds like a chemical... Or an ectopic?! My gp said to call if pain gets worse as have had SO my risk is higher.
Sorry for a me me me post.
Hope everyone had a lovely sunny Easter and happy healthy living is doing wonders for everyone. X

Oh wow rosa, I've been checking Mumsnet to see if there had been any news from you. You should absolutely be taking everything. The night before I saw Dr S for the first time after my BFP I almost didn't take my medication as I was so sure I'd miscarried. I had such a surprise when he told me there was a heartbeat. Can you do a FRER test in the morning as then you can see if there is a progression? You can also compare them with other tests online. The internet cheapies didn't really work for me before AF was due. I am crossing everything for you. I think you have every reason to feel positive although I know how hard it is. Sending a big hug, xxxxx

Thanks Hope- don't you think faint with achey and some spotting = bad news? I so want to be positive in every way.. But scared. What's a FRER test? Sunday and Mon I used the conception indicator Clear blue and it said 1-2 weeks. I'm only 26 days today. The very cheap today didn't register, but whatever GPs use showed a faint line. I should get my HCG test back tomorrow and apparently (according to my accu lady) it should be at least 500 for a strong preg. And will need to double.. So need another blood test Thurs. X

The first few days are by far the most difficult so you just be as kind to yourself as you can. It is great you have a good GP who will do early bloods. The level of them doesn't matter at this stage, just the progression, so ideally they will be doubling. Actually mine weren't quite doubling but it seems to be working out ok!
The FRER are the first response tests. I obsessively did them every morning to see if they were getting darker. It took ages! They are very sensitive though so for me worked well. It is still so early and so I think it is great news your GP's test came up positive. I'm sending you all of my best thoughts! And don't worry about the spotting. I had some too! Give me a shout with anything at all, xxxx

Cautious congrats Rosa! Am so pleased! Yes keep taking the meds as per your protocol and I think a CB registering is v v positive as they are less sensitive. Also cheapies are notorious for inaccuracies/less dye. Frer I used and like hope was a bit obsessed watching the colour progress!
I can't really comment about sporting achiness as never gone the whole hog but o have googled the hell out of it and seems normal part of baby nestling in there!! I have had 4 mcs...2 spotting and 2 not...I have a theory that being on aspirin and the blood being thinner has something to do with it (my theory nothing docs said).

For the so risk do they mean hyper stimulation? I have read you need to drink lots of water for that!

So pleased for you rosa...try and stay positive as these few days like hope said are nervewracking xxx

Thanks Hope.. Really appreciate it. Will try find these in Boots tomorrow. I'm shattered as had 3 hours sleep and was in work early to sort a visit from the PM of all things!
I was a bit cheeky with the bloods as I just called to book a test with the nurse (my liver result was a bit high so stopped hydroxy and wanted to see if better- and asked if she could do HCG too). I then saw a GP on call who was so helpful and offered to do the bloods anyway. She didn't know anything but kept calling consultants to get answers. If only all docs were so lovely and helpful. My IVF appointment came through for early May. We do need to pay, even on NHS it's £4.5kish. So at least that's lined up too.. Lots to read though. Trying, have you got your head round it all? I think you were maybe lying low for a bit though so hope you're well if so.
Determined - hope the supplements are good. I made the most scary looking juice at the weekend which took my DH a day to get through but I had in seconds. Apple, carrot, cucumber, celery, kiwi, courgette, broccoli, lime and both macca and spirilina powder. Yes it was greeny brown and not the most delicious but really virtuous! X

Thanks Determined - it really, really helps to have you girls here, I can't tell you! Apparently SO can slightly increase risk of ectopic preg so I've to call if pain gets any worse. This could be a v long week... And then who knows. I'm going to try wfh tomorrow and rest more. Have London trips coming up.. My accu lady said I should avoid but not sure how supportive work will be .. This could go on... Really hope this is good news and it's contagious for you all x

Meant to say, the achy feeling is a great sign too! I had full on period pains and back ache until I was seven weeks. I rang Louise and she said it was the cyclogest which I think was the case.
I wish I could make this time go faster for you. The waiting is torture but this proves that your body can get pregnant. Also it is still much more likely that this pregnancy will work out than not. I have everything crossed and more! Xxx

Achy feeling could also be everything bedding in. I had it with my son too. I found it stopped around 16 weeks.

Oh that's wonderful news rosa! Ur one of those who gets the BFP when the ivf appt comes through! It's natural to be totally worrying urself, but ur on asprin and that will def make u spot. Plus spotting is normal in early preg for most! It's just us lot that worry! Also ur on all the treatment and its ur turn to give us good news! Keep us posted tmrw! Yay
Don't worry about work, that comes second now.

Yes rosa, done a whole load of bed time reading. It's taken a long time to get my head around it. I'm hoping I can start mid may. Im just waiting for some miscarriahe immunology bloods to come back-they went to Chicago too! I also want another sperm check for DH-3 pregnancies in one year but his count is so low now we can even have st fwd ivf?? Having isci..we can't get our head around that....saying that it has taken longer this time so obv something has changed. His count has magically dropped?! After taking all the supplemtns?

I'm feeling a bit better about it all, after the initial shock. At least it's not months of waiting for a bFp and from St to finish its a one month protcol and I'll know soon enough. If it doesn't work it's only a few month break, and we go again. Now I know a natural pregnancy is bascially off the cards I have no choice but to get on with it

Fingers crossed for u rosa, good news is due and I'm sure it will be urs

It is so good that you have the IVF appointment through too. Hopefully it will help you to know it is there. If you work in politics then I'm sure this is a crazy busy time for you but just take the time whichever way you can. There is nothing more important than this. Having said that, in some ways it is good to be busy! As you say, it could be a long week...
Meant to say, my hcg levels were only 200 and something on day 13.

Sending you a big hug too trying. Everyone I know who has had IVF has either had it work first or second time and I know five different people that did it. You so deserve good news soon too and it will happen for you, xxxx

Thanks Hope and Trying. Agree with everything Hope said about IVF. Of course not looking fwd to drugs if I need but the process of being taken care of and relative success was making me feel more positive.
By the way I stopped asprin a couple of months ago - for no particular reason other than I was given mixed advice. I might start again now- what do you think? Cyclogest tonight .. Joy. Hope doesn't give me more spots. Whet with the pred bloat, the hydroxy hair loss I'm already a stunner..!
Thanks for reassurance on hcg levels Hope. Will stay in touch xxx

Just stopping by and saw your news Rosa. So pleased and keeping everything crossed for you. I d agree with everyone else to take everything inc the aspirin, it helps good placental blood flow and reduces pre eclampsia risk and i think most controversy is around it affecting implantation which has already happened. Really really hope this is a sticky one for you, you deserve it. x