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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:
Hopender · 27/03/2015 14:37

Hi rosa, part of my treatment plan from Dr S involved cutting out gluten completely. I never had any problems that I knew about with gluten but this pregnancy is proving a breeze compared to the one I had with my son, and of course there is the fact I haven't miscarried. After seven miscarriages it must be one of the things that made a difference. So it might be worth trying to cut it out, although, as you say, we are all different.
Have you heard of an IVF place called CRM in London? Might be worth travelling down because they have great success rates. Hang in there, it will happen for you, xx

Rosa27 · 27/03/2015 15:24

Thanks Hope- will look into. How are you doing though?? So great things going well .. I guess you never fully relax after miscarriages but you're well into the safe zone and you must be dying to meet your new wee one now! I really hope you're right on it happening. This thread needs a boost of good news and ideally we will all have some before you have baby number 2 xx

Drttc · 27/03/2015 15:32

Cheers ladies. Very interesting about lifestyle changes.... Definitely going to give this a think!

So is gluten free the way to go? Is that basically bread/wheat? Does that mean no rice :(?

Any other changes?

Drttc · 27/03/2015 15:32

I agree this thread needs some good news!

Determined123 · 27/03/2015 18:17

Hey Ladies,

The topic of nutrition and auto immunity is very close to my heart. So much so I have decided to put off any further retests (one retest is enough for now) and try and give myself a helping hand via nutrition & supplements. I haven't been well lately and i don't think more steroids and a retest and then it not be great news is a good move for me at the moment. I'm not strong enough. (I have my best friend hen and wedding coming up and am not missing out (mentally missing out iykwim) on everything that comes with that due to lots of drugs and maybe another MC). A bold move one met with cynicism by many I am sure but I figured I wasn't born this way so surely I can reverse this (or at least tame it a bit).

I saw a nutritionist a few weeks ago and had blood test for my vits and mins and a hair test for metal toxicity. Got my results yesterday. Ironically I was low in zinc (immune system), iodine (thyroid issues), magnesium, Omega 3 (I have been taking omega 3 by the lorry load and have loads in my diet I can tell you) and was taking too much selenium (for my thyroid). I was also toxic in mercury! (am trying to see if there was a link between this and hashi but have since heard we are all toxic in mercury! blah!).

I have done a lot of reading around nutrition (and the nutritionist advised also) to cut out gluten and dairy. (Dairy I am struggling with tbh).

Anyway (sorry for long post) but I truly believe that some of these nasty immune issues we have can be reduced if cut out certain triggers (not just food but stress and things like that). So that's what I am going to do. I am going to detox and get my 'health back' hopefully over the next few months before we think about ttc again.

It's not what I wanted as I would rather get back on it but I don't feel my body could hold a pregnancy right now...(even though my eggs turn another year older today!!). I am going to detox and try and kick this autoimmunity in the butt or at least get myself in a position that I don't need super powerful drugs!!! (fingers crossed).

If I have to resort to the hard stuff and IVIG one day (I really really don't want to) then I may. But I am hoping I don't ever get that far!!! Grin

Hope you all have a lovely weekend planned! I'm off for a gluten, diary, alcohol free dinner Wink

xxxxxxxxx

Rosa27 · 27/03/2015 18:53

Determined- I'm soo on your wavelength. Just back from accu and she told me no gluten, dairy or sugar as all exacerbate inflammation. Same as stress- but harder to manage with work and this challenge in our lives! I find gluten easier to eliminate as good alternatives and you can still have all veg and rice etc. dairy is harder - love yoghurt and cheese and no we need to watch our calcium intake with steroids. She said just take calcium tablets though. She also said eggs are fine as they are natural - it's fermented and processed foods we should avoid. I downloaded that book you mentioned - wahls protocol etc and was interesting and compelling but I think not realistic that I could be that rigid given my job and life. But reassuring to know the approach has worked.
I'm def going to allow dark chocolate and red wine treats though ... They will help with stress which also needs treated Wink
Finally drinking enough water is a really obvious thing I personally don't do enough of to flush toxins out.. So taking a water bottle to work now. Hope my good intentions last!
Happy weekend everyone. One more until Easter when hopefully lots of us have a 4 day weekend Smile x

Determined123 · 27/03/2015 19:26

I'm with you! It's so hard and whatever we do has to be realistic or else you won't be happy and end up stressed triggering an immune response!! Arrghh!! Treats are good too, got to keep it real... dark choc with a high % cocoa is good and red wine has reservatrol (great antioxidant in it). Oh also reduce caffeine and try and eat as organic as poss without going broke is another thing I am trying to do!

For the mentalness/stress I have a hypnotherapy podcast I sometimes play and plan to use that more and am going to try some mindfulness/meditation! I am the worse person in the world for not having a calm brain but I am going to need it for now, for ever and if I ever get/stay pregnant! Whether we are successful with the baby thing or not...it can only help with my general health and wellbeing Smile

Happy Friday xxx

Rosa27 · 27/03/2015 20:21

Agree Determined.. No matter this has to be a good thing. I was devouring Lindor and creme eggs in scary quantities just weeks ago do maybe it's not a bad thing I've not been lucky yet. I have a 45 recording of a hypnotherapy thing I went to after my first MMC but her voice kind of annoys me now which defeats the point! There's a free app called At Ease I quite like as three options and choice of music - and they only last between 9 and -11 mins. But always chill me out, sometimes help me sleep! Let me know if you've found any good ones. Happy weekend xxx

sunnyday01 · 28/03/2015 14:34

That's really Interesting about the nutrition side of stuff, how much did you lay for a session?

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Rosa27 · 29/03/2015 22:19

Hope everyone had good weekends. I just thought I'd check in before another week likely keeps me away. Determined- I just read back our nutrition chat and can't believe I didn't wish you happy birthday.. It must have been a long week as I just didn't click! Hope you managed to do something nice and relax - with red wine and dark chocolate!
I don't know if native else had had cramps from pred? I woke at 4am with painful cramps and night sweats . Assume it's the pred but guess could be other things!
Hope you all have a good week - and Lillies, thinking of you - I wish could say something to help. I've had 2 MMCs so let me know if you want to ask anything. Hopefully lighter nights will help us all feel more positive which has to help xx

Lilliesandchocolate · 30/03/2015 09:52

Hey, thought I'd check in and let you know how it all went.
So, Thursday I rocked up to my local hospital having arranged most thing in the motorway on Wednesday. The team at the hospital were brilliant, so caring. Didn't need to have a extra scan as a letter had been faxed by mr s team confirming my scan results of the previous day which was easier on me. Obviously I was counted as an emergency, not previously planned so they couldn't tell me when it would happen but they were hopeful for that day. But within minutes they told me it would happen at 1pm, something had been cancelled. This was at around 10:30 so not to long to wait. Thank goodness, don't think I'd been able to cope if I had to wait days.
All in all, although wasn't pleasant in any way, it was simple. A few hours wait, then the GA, awake with 20 minutes, rested for a few hours and home by 5. I was fairly controlled waiting but walking down to the theatre and then waiting whilst being prepped for the GA I was very upset, it was horrific. I know there was no way I could've had the procedure done under local. I went under sobbing and woke up the same way which was distressing.
I've suffered with bad cramps since, worse than I thought,and light bleeding. Seen a couple of very small clots but nothing to bad. Lay in bed most of the day Friday, Saturday u did too much and then had to rest, rattling with painkillers for the rest of the day!
I'm pleased that I had the procedure, for my mental health and I would do it again if I ever had too. Please to god I don't!
So now weaning off the pred, taking time to heal for a few months whilst waiting for genetic results. At the moment I can't imagine trying again. Have just thrown my pregnancy notes and paperwork and my tests in the bin.

The new clinic is actually just a few rooms in an existing place, much like before, but very nice. Mr s and Louise were kind but straight to the point. I found my scan uncomfortable and actual bled for a few hours after. Worse bit is to get news like that, then have to walk out into a room full of people then wait whilst we have to pay, all the time trying to choke back your emotions. Why can't payment be done before? You're reeling with bad news and emotions and then you're asked to pay for that?! It's an extra kick in the teeth. If paid before probably wouldn't have given it a thought, but I left thinking I've just paid £210 to be told that. And now I've got to cancel h@h.

Anyway, I'm home, it's almost over and I've my children to distract me. I know I'm lucky to have them, esp my little pred baby. I'm constantly eating and not taking care of myself, I need to get back to my diet but I need some time first.

Thank you for all your support xxx

sunnyday01 · 30/03/2015 11:53

Good to hear from you Lillies, I am glad everything went ok even though it was a horrible situation to be in x

Did you go to the clock house? If so that's not the new clinic, the new one is on the high street - the clock house is just temporary until it's finished being renovated.

I've got a terrible cold at the minute but hoping it clears by Thursday when I have my scan and DTD starts! Just went to get my prescription of my injection and more hydroxy and the bill was £104!!!! If the second pregnancy on this treatment is not successful I'm not sure if we can afford to do anymore :(

OP posts:
Lilliesandchocolate · 30/03/2015 13:34

Oh really sunny? I didn't know that, only knew we were going somewhere different when we got the reminder text and noticed the clock house as a new name.
All the cost is a nightmare isn't it. We had saved the amount needed for treatment if we were successful in one go. Obviously we weren't so we are £700 or so down and will need to replace that before we start again. Money's tight here, hence the need to save up.

sunnyday01 · 30/03/2015 13:47

Yep all my appts have been at the clock house, before that they were based at the new life centre.

Yes it's all so expensive, and doing SO is £250 a month. We've been very lucky that our parents have helped out but the money won't last forever. dH says I should let him worry about the money but of it but it does stop us doing stuff like decorating our house or going on holiday as we need the money for treatment. But on the other hand it's something we want so badly I'm sure we would find a way to pay for it.

OP posts:
Lilliesandchocolate · 30/03/2015 20:37

Ah' I've only ever been to new life hence my confusion.

I can't imagine picking myself up again to try again right now. I'm sure we will, just can't see it right now. I need to heal I guess and get more mental strength to face it now I've experienced my first mmc on treatment and what it means. Mr s wants us to back to discuss results from genetic test before we start again, that'll be more money. Isn't it time for the NHS to recognise NKC?!
Also wondering about SO, took us a surprising amount of time to conceive this time. Plus about hydroxy. But ultimately I need those results plus a cycle to reset me so Ive no need to wonder too much at the moment - easier said than done!!!

sunnyday01 · 30/03/2015 21:34

Yes we all deal with it differently and need differing amounts if time to be ready again, we just have to do things when we feel ready to go again xx look after yourself

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Rosa27 · 30/03/2015 22:26

So sorry Lillies, your updates brought back lots of painful memories, that to be honest I think about too much. It's not the pain and horror as you say, it's managed quite well (payment around happy expecting mum's aside!) - it's what it all represents in terms of hopes and dreams. We can only do so much though.. I only wish we had crystal balls...
When the time comes there are a few of us who can share SO and hydroxy etc experiences. Take care and hard as it, try to focus on the moment and look after yourself. Xx
Hi to Sunny, Trying, Hope, Determined, dttrc, hula and anyone else. On my phone and hard to scroll back xx

Drttc · 30/03/2015 23:18

Hi ladies!

I've been lurking but not had much to contribute. Been a bit down because I've not had any EWCM for some reason (a first) which makes me think this cycle won't work for us. I've only had wet cervical mucus which I've read is okay but not 'the best'. What a let down :( !

Drttc · 30/03/2015 23:20

And in reference to Dr S payments... I agree they're excruciating! But I personally feel so desperate I'd probably hand over every pence I have. Not proud to admit that!

sunnyday01 · 31/03/2015 21:58

Really fed up today, apart from having a bad cold one of my close friends told me she is pregnant with her 2nd child - this means my two close friends have both got pregnant, had a baby and got oregnancy again in the time it's taken me to try and have 1. I feel like they are completing their families and I haven't even started. Hate having these NK cells - so rubbish

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Drttc · 31/03/2015 22:47

So sorry sunny :(

My friends and family haven't started having kids yet BUT as we've all just started getting married I'd be surprised if there isn't 1-2 announcements by summer, even more come Christmas. The thought absolutely devastates me. Of course I want them all to have babies, I just want to join them and have my own! I was also the broodiest in the bunch... Figures!

Drttc · 31/03/2015 22:48

On another note...

I'll be away in Japan and China for a few weeks!!! So don't think I've left the group- just going to be a bit quiet :) x

sunnyday01 · 01/04/2015 08:38

I know what you mean, I want to be joining my friends too.

Have a great time in Japan.

I've contacted a nutritionist to see if they can help me, appointment is £75 - can't decide what to do as don't think I could cut out dairy or gluten!

OP posts:
Tryingno1 · 01/04/2015 17:42

Hey girls.
Lillies - im so sorry once again. I hope u have recovered physically. Thinking of u Flowers
Sunny it's ultra crap. My SIL is about my have no 2 from the same time I've been trying for one. I want to scream!
Determined happy bday! Good postive attitude! Enjoy ur months off TTC.
Drtcc enjoy China and Japan! I've been to China and its amazing
Hi to others

So I had a bit of a bombshell today. Ivf appt. dh has low sperm count motility(boderline) and morphology(well boderline). So that's why we r not getting preg. The consultant couldn't really explain why we had 3 mega quick pregnancies (by quick I mean 2 months average!) but he said we it's still possible to get preg obv but rates r much much lower. So he's advised us isci.

I'm pretty upset. I was secretly hoping we would just get preg but the other 3 appear to have been flukes. There was some suggestion that maybe the poor sperm May have led to the miscarriaged. Feel like with infertilith and miscarriahes I'll literally never be with a baby. I feel like the world is playing a trick on me.

Anyways, what can I do. I'm having some extra immunology testing that Mr s doesn't do like LAD and HLA testing (I know Mr gorgy in London does them if u guys r interested). And then starting ivf/isci prob mid May ish. This is going to be a nightmare with work.

I'll pop into here now and then but I think I need some time to just get on with it and not obssess over every little thing. So I'll be lurking if not writing!

I'm hoping to see some Bfps on here soon and then some good scan news

Sorry to ramble on, brain is a mess!

Xxxx

Tryingno1 · 01/04/2015 17:43

Oh one good thing!! I know why I'm not getting preg! I prefer having an answer

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