Immune /natural killer cell treatment when ttc or pregnant (aka the 16th 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

Snoopy I was advised to take pred in the morning, ideally by 9am as that follows the natural pattern of cortisol surge. I am also on thyroxine and was told not to take them too close together and take thyroxine about an hour before any food. So now take my thyroxine and 5.30am when DH alarm goes off and go back to sleep and have pred around 8.30am.
Were you told to take pred at lunch time?
Also everything crossed for you when you test and hope you'll get your BFP...

Swlondonnanny-im obssed with people getting their Dh sperm tested too! I went through 8 months no BFP a HSG and loads of bloods. To find out DH has severely low count count and morphology! He thought I was being weird asking him to have it tested as we had 3 quick conceptions before. He has testicular failure which was deveolped over the last 2.5 years we have tried. He's had 4/5 tests now and all the same. Everyone always focus on the woman and prods us! Anyways we have been freezing his sperm so will have enough for more cycles.
I'm off to London to now to see what we can do for dH sperm! I'll let u know if any vitamins etc are suggested

Urology appt was good! He's put dh on tamoxifen with a hope it will keep his count stable rather than dropping to zero! He doesn't think its contributing hugely to the miscarriages as we made decent bladtocysts but suggested sperm fragmentatiom and anueploidy tests to check this out. We seeing him in a month for these tests and to see how dH soerm is doing on the tamoxifen. He gave us hope that we can stabilise things and get his sperm at good quality incase it is playing a minor role. Overal hopeful!
Hope u all have a good weekend :)

Thanks swlnanny - dh had last test 6mn ago and all good and has had about 4x tests over last few years and all consistently ok tho never had dna fragmentation. Maybe if no joy next mn i should get him to repeat but with the fragmentation ?

Trying - that all sounds really positive and great your dh can do something to stabilise things.

sw I was just told make sure to keep your steroids and vitamins away from the thyroxine.

Even though I'm office bound at the moment I am starting work at 0630-0700 so breakfast for me is usually about 0515. I might try taking the steroids with my mid morning snack if you think it's better - celery, carrots and pumpkin seed butter, yum

Hello everyone! Hope you're all having a great start on this Monday morning!

I'm a large Americano coffee in to my London journey. Seeing Dr. S today! I don't really think there's anything additional he can add to my programme if I'm honest. But let's see... CD8 for me!

How are you ladies? Trying, Sunny, Rosa, Snoopy, Seeking, Sw? Anyone I may have missed?

I'm glad to be back from the hen do...!

Morning Drttc - glad you are through the hen do - was it ok, or did you just survive it?!!

Will be interesting to see what Dr S says - let us know how you get on.

All ok this end, I think! the weeks seem to be going so slow and I'm having trouble concentrating on anything really. Plus I haven't been sleeping too well over the past week or so which I think is down to the pred but i'm weaning off it now so hopefully once I have finished it will be better. I have a scan with Dr S on Saturday, so starting to get scan fear again!

Aw sunny, you're doing so well! Scanxiety is a killer. It would be so much easier if we were all built like Teletubbies

drttc let us know how you get on. And well done on getting through the hen do. Were you drinking or were you being virtuous?

Glad I got to work at 0630 this morning, it's all such a mess, everything is so disorganised, makes me very sweary.

I shed a few tears with my mum this weekend, told her I don't believe any of this will work and that the best I have to hope for is that I don't miscarry on any important dates or on holiday in September. Which isn't looking likely anyway, supposed to test this weekend coming but zero symptoms. Oh well

Trying, glad you're holding up okay. Good luck with your scan. What exactly is the scan for?

Hey Snoopy! I really know how you feel. I've been soooo upset in the last week & resigning myself to the possibility that it's just never going to work. It's so hard. I feel a bit better though as I follow this woman on YouTube who is about our age, has had 4 miscarriages that never made it through 7 weeks, and has now been 5th time lucky. It happens!

As for me... I need advice ladies!!! Dr.S says that we can either try one more time on the same programme, making the assumption that this last loss was ectopic or bad chromosomes OR we can have intralipids BEFORE ovulation. If we want to make this cycle we would need to decide today to get it booked... What do you think?

He just said that chemical pregnancies (pre 6 weeks) are the hardest ones to treat & the problem that keeps him up at night. Says he thinks I need more immunity support so early intralipids should help. I asked if he's had success with this approach & he says yes. At first i thought let's give it one more go. But now I'm thinking- can we take another miscarriage this month? :-/ I'm not sure.

Hen do was pretty bloody difficult if I'm honest. It had some lovely moments... But as expected loads of baby talk from the newly pregnant girl. It's funny because when they told us they said it was top secret & they were waiting until 20 weeks to announce (never believed it for a second), yet at the hen she very openly let everyone (she knew 4 out of the 16 people there) know she was eating for 2. She made of few predictable comments to me like 'oh, I'd be shocked if you'd participated in the sports activities' which really irritated me. She doesn't know me, yet openly talks crap about me like she does! I've been running 3-4 times a week for years- so why wouldn't I participate? Ughhhhhhh sometimes you just need to take a deep breath!

Drttc please do have those intralipids before ovulation if you can.
I am impressed that dr s said that chemicals are the hardest to treat... I had my share of them... It is so draining, physically and emotionally as well.
Dr Ndukwe uses intralipids quite a lot, also Dr gorgy (CD10). So far it didn't work for me but I believe I need IVIGs anyway. The only problem I had with intralipids before ovulation was that it messed up my cycles quite a bit. Still ovulated but much later. But haven't heard about anyone else having this issue. My thyroid is really not good and I avoid soya because of that so guess loads of soya oil in my blood didn't help.
Snoopy I really hope you will get your sticky BFP this weekend. Re timing of pred - I try to take it as close to 9am as possible and at the same time every day. One day I forgot till lunch time and I really didn't feel well. My my adrenals -as well as my thyroid - are really sensitive to any hormonal changes...
Hula sperm DNA fragmentation test is very useful to have, it is not cheap though. Is your GP helpful in doing your hormonal profile? Like day 3 test?
Trying good to hear that you feel a bit more positive after your Fri appointment...

drttc - did you mean me and the scan?

If so , mr s likes to see me every couple of weeks - this may be my last one as my last one is due at 15 weeks but he is on hols.

drttc, sorry I get mixed up with the stats, how many of your losses have been before six weeks? If it were me I'd let DH decide and I know he'd say absolutely go for it, what have you got to lose (apart from £300 haha).
I hate people like that. I'm afraid the bitch in me might have come in that situation. Some women have no idea do they?

The thing is I'm not even massively sad. I just don't want to be poked and prodded anymore.
I'm wondering if I've reached the point where I would rather want to be left to miscarry repeatedly without all the trauma caused by doctors who don't really care. I've got marks on my arms and wrists from all the tests, drips etc that aren't fading. I haven't been to my GP or a hospital since the last mc because I physically can't do it. I'm not giving up, in the sense I'm still dtd and taking meds mostly supervised by DH, but I've realised that other things make me happy too and I'm making plans for a child free future.

Whoops so sorry sunny! Think I got confused when I was I skipping back to for replies! Yes, of course you have your scan! How many weeks will you be by then?

hey drtcc - i think u misread sunny message as mine! i have no scan!

firstly hen -
well done for going and getting through it. where was the need for the stupid comments?? why did she say that? is she slightly competitive and trying to say she got in first? UGH NOT NEEDED. i hope u managed to enjoy some of it.

secondly -
how ur feeling - its so CRAP. i had a bad day on sat. truly believing it may never work out, i go google mad when this happens and i spent ages looking up success/failures. i sadly did find a small number of women who didn't have luck :( but the overwhelming majority get there in the end.
yest and today I'm feeling better - i wish i knew what controlled it! i think failing on TX makes things harder..(and i know for me going through IVF and then failing has also compounded the crappiness).....i think we just have to believe that we have age on our side and as long as stay strong in our mind and keep going - one of them will just HAVE to work out. so keep doing things that make you happy so you can keep going with this journey. my NHS RM consultant said that by 4/5 miscarriages most women have had their baby?? plus me, u, seeking and Determined are all on no 4 and similar ages......we can't all be doomed! and I'm sure we will be fine soon (?!) PLEASEEEEEE!!!

thirdly -
when i saw MR S last year he said that chemicals were the one that worried him the most too. i don't quite understand what a chemical is though? (i think he said when someone has a positive for a few days and then it goes?) i mean was my last one a chemical? i had a positive test at 4, 4+2, 4+4 all darker. then blood tests at 5+4 weeks showed HCG only 418 - which is way too low. I had intralipids pre transfer and didn't do me any good! infact this is my earliest lost. i think having intralipids though before is a good idea to suppress ur immune system further......but you have to be ready/strong for a bfp so soon as u do you preg quickly. were you taking the pred before this time?

sorry for the rambling post to u!

hula - good luck with ur little ones op, hope it goes smoothly and u sleep the night before!

sorry missed ur post snoopy. Sorry work is pants, have they backed off with ur time off during ur last MC? its hard with all the tests and stuff. I feel FAT, i have SPOTTY skin and my hair on places i never really had it is THICK. i look and feel awful after being pumped with drugs and then coming of them. i didn't mind/complain when i thought it was preg. sounds like you could do with a little break from it all, and then see what happens? my stuff won't kick off till october earliest so I'm enforced on a break!

Hey Snoopy! I know what you mean about still trying but not necessarily quite believing. That's how I felt even when I had my last BFP! I've had 4 mc all ending by about 6 weeks or earlier. 3 of them in the last 6 months. Back to ttc this month & now debating if I need to get intralipids in by Thursday... So hard though as of course there's no guarantee I'll even get pregnant this month!

I'm so sorry to hear you're covered in marks though! How traumatic :( If you don't mind me asking, what's your age again?

BABY

Hopender- (38yrs) 7 miscarriages, one DS, pred, cycolgest, baby aspirin and intralipids. Baby boy born!

2nd trimester

Rosa (39yrs) - 3 MMC
(11.5, 6.5, 7.5). 6 months ttc on treatment. On complex programme for high NK, cytokines and thyroid antibodies (hydroxy, pred, intralipids)- had allergy to Humira. SO programme (16 Weeks)

1st trimester

Sunny (32 yrs)- high nk cells - hydroxy, pred intralipids - 3 mc (1 on treatment). (9weeks)

TTC

Hula2 (39 years) - one DS (took 18mns with low amh but no other probs), one MC at 9wks, ttc no 2 19 mns (12mns since last mc), low amh, borderline cytokines, high nks, on complex nk plan (pred, intralipids). Humira completed. SO cycle 1.

Drttc- (28 yrs old) 4 MCS, 1 on treatment (6 wks, 4wks 2 days, 5.5 weeks, 6 wks), very high NKC on complex treatment plan: hydroxy 2x day, 25 mg pred from ovulation, add cyclogest on bfp & Intralipids every 4 wks until 16 wks.

SeekingMiracles: (31)
4 mcs DEC'13 (5.5w), JUNE '14 (blighted ovum 7weeks), OCT '14 (Chem) JUNE '15 (9w).
High NK cells and ProThrombin gene variant.

Swlondonnanny (39) TTC no 1 (since dec 2010) multiple chemicals /miscarriages in week 5. TTC naturally. Have high uNK cell, normal blood NKcells but high activity, really high thyroid antibodies, borderline proteins C and S deficiency , borderline high TNFa.
On prednisolone, fragmin and intralipids from BFP

Snoopy (29) ttc number 1 since sep 14.
Mmc at about 11 weeks dec 14
Mc at about 5.5 weeks feb 15
Mc at about 6.5 - 7 weeks may 15
High nk cells so the usual pred, cyclogest combo.

Morgan (30), 1 DD born 2013, then MMC Summer 2014 where heartbeat stopped between 8-10/40 scans & needed a MVA under local, spontaneous natural MC of probably a blighted ovum started at about 6/40 Autumn 2014 and another MMC Spring 2015 where again we got to just over 8/40 size & know that one was a genetically normal little boy.

WTTC

Determined123 (32)- awaiting (retest) results. 4mcs (2 on treatment).

Tryingno1 (31 yrs old)- 4 mc. Ttc since April 2012. 5.5 weeks, 9 weeks, 6.4 weeks, 5 weeks. last miscarriage on dex,cleaxane,aspirin and IL intralipds. and - Ivf as low sperm. High nk cells, pa1 mutation. C4/m2 mutation. Hla dq match and low LAD.

Hey Trying! Sorry about the mix up!

Well as I was feeling so low I opted out of the activity (hard core wilderness activity which everyone is currently sore from) and said I felt poorly. She came later in the day I didn't even ask why of sat out, just proclaimed she knew I wouldn't have participated. She must have gathered this from the 5 minutes worth of conversation we've had in 3 years! I assume she has me pegged as some sort of unflattering stereotype and would like to spread the word? I've no idea why and would love if she'd stop. She always went through this lovely phase of publicly saying that I had fake hair extensions in after I grew my hair out. I always said 'No I don't' and she would just respond like 'Sure you don't- wink!' It was particularly hurtful as I'd had a bout of alopecia which I managed to cover up WITHOUT using fake hair... Guess she has a talent for hitting me where hurts!

Awww that's actually a really good way of looking at it. We're probably more equipped with knowledge than most RMC women have ever been. If we stick this out, we will get there!

A chemical is before/up to 6 weeks pregnant. It becomes a clinical pregnancy once they can see it on a scan... So yes we both had chemicals last time (and I've had them every time). Essentially it's a pregnancy that never was able to properly kick off.

I'd skipped the pred this cycle before my BFP as it was screwing with my cycle! I suppose ideally I should stay on it every month...

Excuse the massive amount of typos! You can kind of make out my meanings lol

I see, so I've had 2 chemicals as first one and this one no scan and just bled. While second i as 9 and third I saw a heartbeat but it was meaauring small for 2 weeks and I had been spotting.
U and ur DH going to decide re the intralipds? Maybe try with the pred pre ovulation first? I take it 2 days post LH surge so it didn't affect my cycle and stopped 10dpo.
This girl sounds like she has issues with u! Stay away from her, u need to surround ursrlf with postuve happy people. I've started elimating people that I'm Able to who r not good for me!

drttc I'm 29 ( for a couple more month) . The marks look a bit like track marks, which is a bit upsetting. I do have very pale skin so I'm hoping they'll eventually fade if the veins don't get prodded for a while.
I think you should go for the intralipids. I have absolute faith that all you ladies are going to make it, I just feel pretty despondent about my own chances haha I keep thinking that first little one who was the mmc was my chance because he got the furthest.

trying I tried emailing HR who told me to call another HR dept and every time I try to use my phone in the toilet someone walks in don't want to discuss it with people listening. Work is just so disorganised, it hurts my head. And apparently I might now have to do presentations on my work (which I didn't think I was doing very well) because we're actually the only borough doing it right. The public would be horrified if they knew!
Oh and on the hair thing, I found a big, black, thick hair in my cheek yesterday! I had to pluck it! I'm using la Roche posay effaclar duo to keep the spots under control, no retinol so ttc/ pregnancy safe and all that blah.
Are you finding the no ttc thing is actually a blessing in disguise? I found it liberating to just be me for a little bit.

Have I missed an update from determined?

Drtcc-I don't want to make thungs complex! But have a look on fertilityfriends. U might want to look into dna fragmentation and a few other sperm tests. People always overlook the man and sperm is much more easily treated. If u push mr s I think he might run them for u-Ive read on the old pred threads that he did them for one of the girls who really pushed him! He doesn't believe it's an issue though....Ow do u have a CARE clinic near u? U can just book an appt and get it done by them or anther clinic near u (sorry don't rem where u live) Ur dH can have normal cpunt etc but have fragmention issues. The urologist is running that and sperm reactive free radical and also sperm anueploidy tests next month for my DH as these are causes for miscarriages.

Also did u talk to mr s about adding clexane to ur programme? It's part of all ivf RM programmes and quenby uses it for all her patients. It promtes placental growth even if u don't have a clotting issue?

Sorry these r just thoughts for u' I hope it doesn't confuse u! I didn't have the sperm stuff done but now I'm Desperate im looking into more. (Plus obv we found out about Dh sperm issue)

Oh and drttc just blank that bitch. Life's too short to have to put up with all that rubbish, DH has said my motto should be 'you piss me off, I cut you out'. I hold a good grudge

Snoopy-when work is crappy is too much isn't it! U just want an easier ride at work when home
Is crap. Kinda liberating but also ive spent alllll of today ringing and making appts. It's tiring and we have a lot to plan before we shift to london
The urologist also found a varicocele so DH needs that scanning and then sorting out. It never ends!!!! But it might help raise his sperm count. I feel like our lives are fulllllll of appts and we are under so many diff docs! Got our ivf review next week wonder wot they will have to say/suggest.

Determined results responded to pred and IL now yay! Think shes waiting to see Mr s for a plan.

Haha snoopy I like that!! It's the attitude ive takes since miscarriage 3. Simply don't have time for crap like that Ontop of my own crap! It's annoying sometimes u just can't avoid these people. Sounds like DRtCC couldn't have avoided her