Immune /natural killer cell treatment when ttc or pregnant (aka the 18th pred thread!)

[Hula2]

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

Only test I had was for thyroid antibodies, that being positive and family history of autoimmune disorders and my last failed cycle was enough for them to say to give it all a try

Yes I have friends who have just tried everything as precaution.
I lay everything out in the morning the night before with a banana and water. Then at 6am i take everything and go back to sleep for an hour. Then around lunchtime intake aspirin, multi bits, vit d, &omega 3. I nearly had a heart attack one day when I thought I sleepily took an anti sickness tablet instead of a steroid so thought it was best to lay out! I know - so much to take!

Evening Ladies,

Lots being happening on here !

Seeking - YAY YAY YAY for your bfp. What great news. Booking those tests must have done the trick. Hope you re doing ok and time isn t dragging too much. When are u having a scan ?

Trying - hows the ivf going ? Are you still waiting for af or are you on stims yet ?

Snoopy and Drttc - hope things are progressing well with you guys.

Billy - how s this cycle going after the last long one ? back to normal i hope.

Welcome to the new ladies and so sorry for your journeys that have brought you here. Congrats on those that have their bfps, and good luck for those working on it. There are lots of positive stories of these treatments being sucessful.

Waves to sunny, rosa and anyone i ve forgotten.

Afm - just back from a wonderful time skiing with dh and ds. Af due anytime, tested bfn on what i guess was 11 dpo (not been doing opks) so very likely out and dh will be away next month for a week over fertile time so no chance next month however feeling ok about it. Been having some hypnotherapy to try and help with things whatever the outcome is so maybe its working?.

Hope everyone has a good week and good luck Anna with your apointment with Dr S tomorrow.

Hi hula!
Glad you had a lovely time skiing! Sounds perfect. Sorry for your bfn, but it sounds like you're in a better place mentally. Hopefully the hypno continues to work.
I've got my first scan on Friday. Trying to just take my meds and not think about it too much. Which is hard - I get toilet fear every time I go But I have to just have faith in MrS' plan and hope that the DHEA and CoQ10 helped my eggs. Time will tell.

Thanks Hula for the thumbs up and congratulations Seeking- one day at a time is the "mantra", isn't it?
I don't know why but I am so terribly nervous about my appointment with Dr S today- I have read all sorts about how to the point and slightly abrupt he is and I am sure he's seen and dealt with all sorts of extreme stories of rmc so I don't expect him to be particularly sympathetic.
I also had to go through all my medical files of the past 4 years to gather all relevant results, diagnoses etc so as not to repeat certain tests unnecessarily and this was like opening Pandora's box.... It all came flooding back to me and gave me yet another surge of panic and despair.
Hope we will at least get a good and conducive consultation with him today- DH was saying to me last night that he fully expects to come out of it more confused than he is now. Ugh, apologies for the negative rant in the midst of so many positive posts lately

Good luck Anna, although Drs is very to the point he's not harsh with it. He will give you a very honest consultation but you will know where you stand. He's a very compassionate man (you'd have to be working in his field).
After our initial consultation DH came away very doom and gloom, where as I came away feeling positive. I think you will take it however your mindset works naturally. I'm ever the optimist, DH not so much.
With consequent visits though dh has come to really like DrS and his matter of fact manner.
Let us know how you get on, it'll be fine

Hi Hula! Great to hear from you and glad you had a lovely holiday :) I agree about the hypnotherapy as just taking that bit of time to nurture yourself goes such a long way.

Seeking I'm counting the days until your scan! It's going to be good news this time :) Have you felt any different or just pred stuff?

Hey guys!

Seeking hope ur ok. Ur being wonderfully positive and together. I really hope this is ur one :)

Drttc how r u?? U must be nearly 14 weeks! Have u got a bump?

Glad u had a good holiday hula and the hypno is helping u. It's important to look after ursrlf and I hope that bfp does come ur way again and soon.

I'm officially Argc boot camp! I'm going to be confirmed later today I'm ready to start and likely hysteroscopy tmrw and can start stimming.

Amelia glad the scan was ok and I hope days go quick for u!

waves to snoopy sunny waiting and Billy

X

Hi went into my appointment with Dr shehata all guns blazing. I had done tests 2 months prior but because of the long waiting list on the NHS I couldn't see shehata to read me my results until 2 months after the test were done. 2 wks before my app I phoned shehatas secretary to say i might be pregnant and therefore needed the results asap. They refused to give them to me. I went in for my appointment livid and had an argument with shehata. 2 days later I found out I was pregnant and started taking my meds. I then went to a private consultant Dr Gorgy who prescribed me intralipds and clexane and doubled my dose of progesterone. So shehata is not scary at all just a little defiant, egotistical and arrogant but we are all at his mercy unless u change consultants!

Hope ur appointment goes well Anna. If it's private then u have nothing to worry about.

I'm trying Trying... Not always calm and collected but I've decided that I'm doing all I can and that is all I can do. Acceptance
Bit annoyed at the clinic, I emailed last monday to let them know I'd had a bfp and that I need more meds. Catherine said she'd send the prescription out but as yet nothing. I need more pred as of Sunday and don't see DrS until next Wednesday.

How exciting that it's all about to kick off for you! Hope the hysteroscopy goes well. I'm absolutely rooting for you!

Hi to everyone else - Sunny, Snoopy, Drttc, Rosa * Hope you're all ok. Hope those babies are being beautifully cute and cuddly Sunny & Rosa*

This is what I found Seeking... I couldn't believe they wouldn't tell me I had natural killer cells when they knew I could be pregnant! I should have started the meds a few days after I called them had they just told me the results! The results were sitting in their system for 2 months -it's so ridiculous! But luckily I acted fast on bfp and hopefully all is well. It's so hard keeping it together. I have changed my scan to Friday (one more day for little heart to beat!) can you get your GP to prescribe u more pred? It says on the box to go to gp for more. Are u private or NHS with shehata?

Hi Trying! I'm really well :) By LMPim 14 weeks but baby has been measuring a week ahead for most of the scans. Saw Dr S on Saturday and baby was looking great measuring 14+4 then- and he said he's looks like a boy :) Official gender scan is booked for this Saturday! Also having my cervix checked as now I'm paranoid I'll have problems with that. Don't want to take any chances!

Hooray for finally starting ARGC boot camp! What cycle day are you on? Which cycle days do transfers typically land on?

Wow that's great! And another boy!!! I think snoopy is the the only one having a girl on this thread for a long time. Congrats :))))

It's 10-14 days stimulation before trigger. they rang to say they want me to start on wed so will be 2ish weeks after that for collection.

Seeking that's so frustrating hope u get it in time, u don't need other crap to worry about too!

Oh Seeking forgot to say I've got some Pred at home (not sure how much) so can post it to you if needed. Whenever they took long I always emailed again & rang them- always ended up getting it in time! You have every right to annoy them over this!

Thanks Trying :) Eeek so exciting to think you'll be PUPO in about 2 weeks!

They've said they can fax the prescription across to a pharmacy so I'll try that if it doesn't come tomorrow.
I'm just annoyed at myself that I didn't get more from him last time I was there. I'm private with him Amelia

Yay!! Glad your scan went well drttc, is that you done with DrS now? It's amazing how early they can tell the sex!! So exciting for you!!

Hi ladies
drttc fantastic news I'm so happy for you!
And trying so glad things are finally moving forward for you and I'm keeping fingers crossed it all works out! I've got a good feeling!
seeking good luck for your scan!! Keeping fingers crossed.
And anyone else that's got scans!

Hi to everyone else!
There's so much going on in here atm I'm finding it hard to keep track so sorry if I've missed anyone.

My cycle seems to be behaving itself atm and I got my bloods back today - fsh = 7.5 LH = 17 so doc seems fine with that! LH is a bit high so will tell dr S when I see him in March. Will prob do SO next cycle I think.

Hugs to all X

Thanks Drttc, if it's not here tomorrow I might message you if that's ok. They did say they can fax a copy of the prescription over to the pharmacy so I might try that too. Slightly frustrating though!!
How exciting - another little boy!! It's amazing how early they can tell!!! Have you been discharged from DrS now?

It's probably been mentioned before but can I just double check everyone here has prednisolone and clexane till 12 weeks ?

My clinic said just till positive test but seemed ok that I wanted it till 12 weeks but the Dr today said again just two weeks if I get a positive and it's making me panic !

Yes waiting, start weaning off at 12 weeks. Definitely push for that

If I get a bfp I will definitely insist till 12 weeks then thankyou

Hi everyone,

So ysd I had my first meeting with Dr S, who unsurprisingly advised that in his opinion I have an immunological reason for my losses and that my 20 week is somehow linked to the 2 x 9 week ones....As a first approach, we need to stabilise my thyroid function and bring my TSH down to below 2.5 if we can (it's something like 5.4 now which is too high)

I also gave blood for all the uNK cells tests and have been advised to re-check my ovarian reserve (despite the fact that I only had them checked last July at UCLH and I have had PCOs all my life, therefore loads of follicles in each ovary so the added cost of that test was a bit of a hmmmm, really??)

All good so far, he was generally positive he can help us out but the thing that really threw me was his comment that the most difficult cases to treat are "women with unexplained late losses and those with recurrent chemical pregnancies" as apparently the ones with multiple 7/8/9 week losses are usually the easiest to manage.
He also checked my baby's post mortem for CHI (chronic histiocytic intervillositis) which I had never heard of before- apparently it's a placenta clotting condition which is linked to late losses and stillbirths.

When he mentioned this with regards to my first late loss and linked stillbirths to it, I honestly felt a chill down my spine as this is my absolute worse fear, that I will conceive again and suffer a stillbirth...
Apparently, my placenta tested negative for this but the post mortem was done in the Royal London, not the specialist lab he always sent his placentas for thorough investigation (!?!) so now he's planted the fear of "what if I have it and it wasn't picked up properly...!?!"

Apparently there's no way of checking for this whilst pregnant and if I indeed have it, I may still be at risk of another late loss or worse even a stillbirth- despite the meds. WTF!!!!!
He advised that we should wait until we get my immune testing results back anyways but basically he's already confirmed that if I was to decide to try again I would be put on a completely different high risk category, which means meds beyond the 12 week cut off point and scans every 2 weeks between week 6 and week 23.... I can't even begin to imagine the stress this would bring as we are clearly talking about an ongoing risk of a late miscarriage again and whether we can prevent that.

This is a nightmare, neither DH or I slept last night, both tossing and turning thinking about it all.
It's our 3 year wedding anniversary today which marks the date we started trying for baby #2 as well....
Crap :(

Hi Anna,
Sorry you came away from the appointment with yet more worries.
I think you need to take some time to process it all and then when you have the immune results back have a think. It's understandably going to be scary for you going into another pregnancy with your history but I think both private and Nhs will always advise more intense monitoring when you've had a late loss. My friend had a still born and had scans very frequently. If they see any issues then it mayb be safer to bring baby out dinner rather than risk it. I'm sure what ever happens you'll be well cared for in that respect.
DrS did also tell me the same thing about recurrent early losses which did at the time frighten me but I fm refuse to give up. Drttc had a few very early mcs and now she's 14 weeks. I also know of another lady who had a chemical virtually every cycle - 8 i think. She's now had a healthy baby boy.
Just take this process one step at a time. Try not to think of the what ifs and the maybes.

Hello everyone.

So sorry to see so many new faces but you are all definitely in the right place for support and advice.

Congratulations drttc! Another boy! It's making me wonder whether they made a mistake with mine

I'm still suffering with insomnia which is just destroying me but I'm so grateful to be this far. The anterior placenta is also driven NHS me crazy, I can't establish a pattern of movement. I feel her moving every day, some days much more than others but I think I'm going to have to accept its sporadic.