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

991 replies

sunnyday01 · 06/02/2015 20:10

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

OP posts:
sunnyday01 · 13/04/2015 19:32

Finally got dh sperm results back - not good news - he has low mobility - not sure if the exact results as don't really understand what I'm looking at!

We're a bit heartbroken as we feel everything is against U.S. and not sure where yo go from here really. Our gp say the results were obsolete as we have got pregnant 3 times in 2 years - guess I'm in the same boat as trying.

OP posts:
Rosa27 · 13/04/2015 19:44

Sorry Sunny, but don't give up hope.. You've got preg before. My DH is also in low side. A lady I saw for reflexology recommended this...www.spermcomet.com
Might be worth a look. She's adamant there's a lot that can be done to improve all aspect of sperm that can make a big difference. X

Tryingno1 · 13/04/2015 20:16

Hi sunny. Sorry about DH result. But don't worry-the number and morphology are imp too and if they are ok u will get preg again (and u know u can). My Dh had a very low count (5 million, 20 normal) , poor mobility(38, think 50 normal) and morphology was boderline (5, 4 is notmal) So it was shit! As the consultant put it "there's not many there and they are not very handsome" . In fact his face dropped when he saw the results and was quite rude to my dh saying "they are terrible, I wasn't expecting that with your pregnancy history". Good job by dh has a thick skin!!
He also said of course u can get preg with these results but the chances each cycle are a lot lower than a healthy soerm count (5 percent vs 30 each cycle). We are still perplexed as we had no problems getting preg before. I keep wondering is stress has dropped them, as nothing else has changed except he's on supplemtns and drinking less! (Never tested them before but really, I got preg average of 3 Months - that's not consistent with the result we have).

Get your dH on supplements, eating well not smoking and not drinking. Drinking 2 l of water. Lots of berries, tomatoes and nuts. These were the advice from my clinic hand out! I'm literally force feeding these to my dh! He ipens his lunch box and has all sorts of surprises these days, These tests We had were when my dh had dropped his drinkings and already on supplemtns for 6 months so I don't have much hope of them getting better!

Recheck ur dh in 2-3 months and hopefully they will improve. any cough/flu can impact the results too, was he I'll 2-4 Months before? And also rem Mobility is only one part of it. And u can get preg, there's just slight delay.

I know how awful I felt the day I got the news. I felt like it was all against me. But now I feel better at least I'm doing something about it. And it's better than waiting month after month for a bfp which is really getting me down. I feel like I'm at the point that I can't keep waiting and waiting. I want to get on with it and have given it a year by the time ivf starts to happen naturally and it hasn't. I'm not gonna lie, I'm scared and the thought of a bfn after all that effort is awful. But I'm in denial Mode and trying to not think about it!

Rosa-hope ur ok. Why no hcg yet? I logged on hoping to see ur news. I can imagine how terrifying it must be. Just try be postive and tell urself ur due ur good luck now. We are all sending u all out postuve vibes. And eat the choc pudding! Honestly it's not a problem I'm sure! Even zita west says 80 percent good 20 bad is ok and achievable.

Determined-sorry re ur lp. Do u have acu? It may help? But another expense? Also, I think u found SO helped your cycle? Maybe that's the way forward for u. Don't give up hope. We can't! Hopefully happy story no 2 is on this broad and we will join one day soon.

Hula and dildoos thinking of u both.
Sorry if I missed anyone.

Hula2 · 13/04/2015 20:24

Rosa what a pain you didn t get your results today. But stay positive, you re not bleeding and today you are pregnant so hang in there and i so so hope you get some encouraging news tomorrow.

Determined i can understand your frustration with the short LP, it sounds like it maybe worth looking into progesterone to see if you can lengthen it with that. I m guessing you ve got it covered b vits wise.

Sunny hugs to you and your dh. So unfair you ve got this to deal with too but like determined said sperm can really be improved with supplements and lifestyle things. Also at some point it got you preg three times so dont lose hope that it couldn t do again.

Afm I ve being trying to obsess less as its impacting my life and our relationship. I was panicking as my cycles had gone wacky after one go of pred and feared it had tipped my ovaries closer to the big M ! However they have settled back to a day 13 ov and day 3 bloods were ok ish. My fsh is 10, was 9 in nov and 7 a year before that so creaping up and i don t want it higher but had feared it would be alot worse. It does mean however i need to get on with it so managed to pluck up the courage to take the Humira last night. Injection went ok and so far no issues but only one day in, pretty nervous about it really but decided i can t look back and regret not trying it so fingers crossed it brings my cytokines down, have to take next one in 2 wks. Also had a talk with dh, he s happy to have another baby but is questioning contiuing as the process is taking it s toll. We ve agreed 6months more then that s it we need to get on and enjoy the life we have. Dr S said he now advises continuing to ttc while taking humira so i m day 13 and should be ovulating today so it ll be onto the tww for me tomorrow.

Hula2 · 13/04/2015 20:29

Hi Trying - good to hear you re doing ok. Not long now before you can get started, you re doing the right thing so all you can do is stay positive and it s got to happen sometime, it just has to !

Determined123 · 13/04/2015 21:18

Ahh you ladies are amazing...I do feel better today Prob just hormones! Started acu but she is slightly different techniques to the other lady so wonder if it's that?! The only other thing is I don't have reflexology as much so maybe that. I'm taking all the right supplements and managed to get it to 10 and even had a 12 last sept so god knows!!

I still have an Ovitrelle shot in the fridge from xmas but was really hoping I didn't have to use it as I had that 5 weeker/Chem so it's scares me but then my high cytokines that won't reduce scare me too. DH and I have talked about IVIG and I don't think its an option for us just purely for what it is and the risks! Oh well! Anyway...

I'm sorry you didn't get your bloods Rosa, I hope you can get them first thing. To lift the weight off a bit.

Sunny sorry about dhs sperm but I was also told about the comet test from my reflex lady and there are lots of things that can help improve his stats!

Trying do you ever wonder that the tests are just a snapshot in time at the very moment and could be better/worse at any other time? Bodies change and adapt constantly and deal with things like colds and tiredness and hormones on different days...I think I'm going too deep with it all!! Am glad DH is took comments ok! Nothing like delivering news nicely eh!

Hula glad you braved the humira - no regrets!! I hope you and dh crack this right away so the pressure is released.
Sending lots of positivity and trying to send some to myself! Ha!
Xxxxx

SashaKerr · 14/04/2015 14:01

This reply has been deleted

Message withdrawn at poster's request.

Rosa27 · 14/04/2015 18:57

Well I'm still waiting in hcg results to see if things started well for me .. Gp says can take up to 5 working days so guess could be waiting until Thurs for last Thurs test! Anyway had intrallupid and vein was found 1st time - so lots better than 4th as it was when had last year.

Welcome Sasha- I'm not a medical expert but sounds like you might have immune issues as you say. Best thing to do is call the Miscarriage Clinic to discuss what tests you need - they don't repeat anything you might have had in nhs or elsewhere. I'm a year older and sadly no children yet, but had similar number of losses etc- 2/3 were MMC and saw heartbeats so it's rare to lose after that which made me think my body must be attacking them .. I actually had that thought before I knew about NK cells etc.
anyway if you look back over the years there's a lot of success stories. Hope is now several months and we're hoping more will join soon- most of us have had trouble conceiving which I think can be hard when NK cells get into uterus etc after RMC as well as stress that builds up.. So we talk a lot about things to stay positive, calm and help our systems more holistically - like nutrition and accupuncture. We all hang to belief that you get there somehow if you persevere and relax (hard to do both) but as you know it's a lottery and very personal in terms of the impact of trying, never mind treatment. The girls on here are all amazing and super supportive as well as inspiring so you're in the right place. I'm tentatively hopeful .. If I make it to Fri I will be just 5 weeks.. Very early and doing my best to focus on small milestones.
Best of luck with your next step and shout if any specific Qs. X

Hula2 · 14/04/2015 20:11

Rosa thats crazy still no hcg, poor you, the whole point is to reassure you its all going ok but at least you got the intralipids they will be a good boost to the treatment.

Welcome Sasha - so sorry for your losses. From the reading i ve done I think it sounds very like you may have immune issues and i d definetly look at getting tested.

Prof quenby is at coventry, she does a uterine biopsy for nk cells then mainly uses steriods and aspirin/clexane from bfp. Alot of us on here are seeing Dr Shehata in London or surrey (the miscarriage clinic). He does blood tests to diagnose issues and then uses a range of different treatment programmes depending on your results. He tends to use steriods from ovulation. Expect to spend around 2k for first cons and bloods with him.

A really useful book is the Dr Alan Beer book - is your body baby friendly. He s really the founder of repro immunology and one the the first to start treating women for this. He quotes success rates of 75-85% on treatment and there are lots of success stories going back on here so there s definetly hope for a sucessful outcome for you if immune issues are diagnosed.

Drttc · 15/04/2015 04:15

Hi Sasha,

Sounds NK related to me... I've suffered from terrible unexplained hives for years! Dr S has also told me he thinks they can be related to MC. Started hydroxy a few weeks ago in the hope that it'll calm them down (takes about 6 weeks for them to begin taking effect). I've had 3 MC, all before 6 weeks.

SashaKerr · 15/04/2015 07:00

This reply has been deleted

Message withdrawn at poster's request.

Rosa27 · 15/04/2015 13:54

Hi Everyone

Finally got my hcg for last Thurs which was 179 (was 51 two days before) so guess I can take comfort things at least started off well. I've been recommended to step away from the hcg and preg tests now and focus on scan milestones .. Will see..!!

Sasha- I had Bupa cover the initial tests but that's all. Your policy may be different but they said they would do on basis my miscarriages may be due to an underlying condition affecting me they might need to treat - but any treatment to support conception or the maintenance of a pregnancy was beyond the scope. You should also get them to put in writing all the tests they do cover - I was told verbally some were covered and then they challenged the bill and in the end there was some negotiation. Still- any help is better than none when talking in these figures!
Hang in there.. I had 3 in 11 months so I know how hard that is.. You need to have a purpose to stay positive (basically a treatment plan with a doctor you believe in), and do not underestimate the value of a month or so out to recover and focus on you and your family .. I think I'd have suffered less if I hadn't put so much pressure on myself.. Easier said than done though, especially when you don't feel time is on your side. I don't think you need to be worrying too much yet though - lots of successes in early 40s too. X

Tryingno1 · 15/04/2015 14:24

Rosa that's wonderul news. Really happy for u....and ur on all the treatment and u had the intralipids so this really could be ur happy ending. I know it's so hard to think like that but be positive and happy for ur growing bean it will in itself help!

Sasha sorry ur on here. So much sadness ;(. Mr s won't be able to tell u if nk are def the cause from history as u can see me all have diff stories. I had a 6 week loss, a 9 week loss after a perfect heartbeat, then a 5.5 week loss but it was looking bad from About 4.5 weeks. I've got slightly raised nk activity but normal levels. All else negatuve. I'm on steriods and intralipids when I get a bfp but found out dh has poor soerm so headed for isci/ivf now.
Ur local miscarriagr clinic will do a lot of bloods so u don't have to pay mr s for those (unless obv bupa cover it!).

Hula2 · 15/04/2015 20:21

Great news Rosa. Keep up the PMA and here s to a really good scan. Have u got one booked in ?

Rosa27 · 15/04/2015 20:56

Thanks Tryjng & Hula... It feels like I should be 2 months at least now in terms of much I've thought about it... Not yet 5 weeks! Aiming for a scan week after next, or one after that locally (waiting for consultant to confirm when they would expect a heart beat). Then 11th or 18th in London at 8 weeks/9 weeks .. Around the 2nd intrallipid time. I just so hope .. Well you all know. Woke at 2 am and couldn't sleep until 630! Starting to get lovely spots too. Not sure can use usual spot creams but hoping a wee bit be ok. As for sleep .. Hope that gets better!
I hope you don't mind me worrying about this openly. I know it's a good worry to have ... I so wish we could all have our happy endings ASAP this year x

Hula2 · 15/04/2015 22:25

Rosa you know you can say anything here. We re going to get each other thru this journey whatever it takes !

Hope you sleep better tonight.

Afm- Today was the anniversary of my loss. Went to the seaside with my mum and ds. He loved it so much and the weather was beautiful, it really helped not to be sad (tho feeling a little teary now). Hope this year holds positive news for all of us.

SashaKerr · 16/04/2015 08:22

This reply has been deleted

Message withdrawn at poster's request.

Rosa27 · 17/04/2015 21:09

Don't give up hope Sasha... Could you get hcg before thurs to potentially reassure?
I know how you feel having been there before. So hard to get the balance right between staying busy enough to distract yourself but not busy you're not relaxing and looking after yourself.
Today I'm 5 weeks and already had aches that didn't feel good. I did the clear blue hoping for 3+ at 3am this morning (thanks to pred I didn't sleep after that!) but it was still 2-3 weeks. I'm getting the train to London Wed and back late Fri for work and dreading it if feel as exhausted and stressed as this. It will be a very long wait to my first scan if I can get that far. In bed already with dark chocolate!
Thinking of you all and hoping you're all ok x

Drttc · 18/04/2015 13:34

Back from the most amazing holiday :)! So happy!

Rosa I know what it's like to rely on those stupid CB week indicators! I wouldn't worry about it staying at 2-3 wks for a few days longer than expected. There's so much variability with hcg levels!

Hope everyone is feeling relaxed and hopeful- wherever they are in their cycle/journey now. I've kept up to date for the most part with all your progress/results and things are really looking like they're getting somewhere for this group :)

Surprisingly after a lack of EWCMlast month I've just found some on cycle day 7?! Hubby enjoyed that discovery ;)

Drttc · 19/04/2015 14:59

Just had a horrific hive outbreak, and have no idea why :( We estimated I likely had about 1,000 hives from head to toe.... Argh!!!

Rosa27 · 19/04/2015 15:50

Hi Drttc.. Not good.. Were you taking anything while you were away? I got similar after Humira but don't think you've taken that? Could just be a 'harmless' virus though but I'd see your GP ASAP to be safe.
Well I thought steroids were meant to give you energy- couldn't get up today! On a positive I used my last clear blue and got the elusive 3+. I wonder if I will make it for the next 2 weeks or so without any further insight until a first scan... Just praying I don't see any colour when I go to the loo.. Scared every time!
Sasha- any news?
Hi to Trying, Determined, Hope, Hula and everyone else xxx

Rosa27 · 19/04/2015 17:32

Now had some worrying colour.. Very subtle but every time I've miscarried, that's how it started so have a horrible feeling.. So scared... Sorry me, me, me.. Not sure what to do/can do as too early to scan.

Drttc · 19/04/2015 19:46

I'm so sorry you're worried Rosa! I know you're aware color is perfectly normal....l but understand that women like us are particularly scared to it!

Whatever it is, it's out of our hands. Distracting may be the best medicine when your hands are tied. You're not alone, though. We're all thinking of you x

Hula2 · 19/04/2015 20:35

Rosa - just wish i could give you a big hug. It s just horrible when u see colour and it give s you that sinking feeling but it really can go both ways so hang in there and try and send your bean positive vibes. I also completely agree with drttc to try and stay distracted.

Are you one once or twice progesterone ? Is it worth ringing louise tomorrow and upping it if you re just on once daily. Wish i could speed up time for you. Xx

Drttc - sorry about the hives, hope you re ok.

Sasha good luck with the scan thurs, fingers crossed your bean is doing fine.

Hello to everyone else, hope you re all doing ok.

Rosa27 · 19/04/2015 21:19

Thanks guys.. It's just so hard as you all know.. Really scared of going to London Wed-Fri when I've lost one at that time before. Sorry if tmi but my bowel movements are more frequent today (think that can happen before af- and though cyclogest was meant to constipate?!) anyway I will try stay hopeful.. And will ask Louise as you say. Thanks for messages. Really appreciate it. Poor DH doesn't know what to say and nobody else knows yet as don't want them worrying.
Sasha - hope you're bearing up.. Will feel a long week until Thurs but at least you'll know soon, and everything crossed for you.
Hope everyone has a good week xxx

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