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

Oh Seeking.. Such tough times but be strong and we will all hope and wish your wee bean pulls through. It is surely a good sign baby is the right size. And many people get brown and have healthy babies.. I really hope I'm one of them. Don't forget the hypno apps and music and hope you've good support round you during this limbo time. Take care xx

Well baby has grown to 6+1. According to NHS scan I should be 6 exactly today. But heart rate wasn't as fast as he'd like and he said the brown discharge was a negative. Still very much touch and go. He said stay positive though and that we shouldn't give up because he hasn't. Just got to jeep taking the meds and hope for the best.
I need to rearrange my NHS scan to next week and then see him I two weeks.

Ps Seeking - how did it go with Mr S? Thinking of you x

Great to hear all still good Hope! Sent you a personal message too with couple of Qs most of which you've answered.
Seeking .. I share your trauma.. The loo, cramps, no cramps, no nausea. I'm finding everything overwhelmingly, exhaustingly traumatic... Need to revisit the hypno stuff too!
Determined - I also can't get my head around boosting and modulating the immune system .. So complex! X

My acupuncturist said they're more for rebalancing/calming rather than boosting. So from how I see they'd be perfect for those of us with nk issues. Im def going to look into some kind of hypno ... I need to switch off from all this. It's so hard isn't it.

Glad you're doing well Hope! Oh how I wish to be in your shoes and be able to relax even if it's just a little bit. Going to the loo has become the most traumatic experience!

Hi all, just popping in to say hi and that I'm thinking of you all. I'm now 29 weeks which feels pretty crazy. Just hoping everything stays ok. Not that long to go.

Also wanted to let Rosa know I had the Harmony test at 11 weeks. I chose to find out baby's gender this time so Dr S ticked the box for that. Felt pretty bizarre finding out so early, exciting too though! Do you think you will find out gender?

Seeking can you download a hypno cd to your phone/iPod I started and it really helped...has a break and boom, here I am stressed and in decisive again!

Glad you feel better tho!

Yes I've heard about those (reishi and cordyceps??) my only concern is this whole boosting immune system versus modulating it!! I read blueberries and black pepper increase cytocicity and had to have a word with myself that that isn't the cause of my miscarriages! I feel I'm turning into a nutter xx

Thanks ladies.
I've had acupuncture this morning and feel a lot more chilled. I just wish I could stop my brain from thinking. I'd like to just sleep for the next 6 weeks and wake up and all is well.
I feel like I'm going to need t be scanned weekly for my own mental health. After today I've got a 2 week wait until my next!
Determined I hope you and the Drs find a way around your pesky nk cells that doesn't require ivig. My acupuncturist is always on about the power of medicinal mushrooms to calm the immune system - I know it can all sound a bit mumbo jumbo but I guess it's worth a shot. She told me to get mushrooms (the fancy varieties) into as many meals as poss.

thanks Rosa..god why is this so traumatic for us - so unfair!

good luck for later seeking - I have everything crossed for you!

I have no idea about next steps...ivig just goes against all that I stand for...I worry about it not working and spending the money and long term effects and other auto immune issues...no point getting a family that I am too sick to look after. I haven't been specifically told I need it, just that the third test is to try and avoid me having it...but if the lab results are saying it I am pretty sure my body will react in a similar way!? Sorry im rambling....

xx

Seeking - so sorry you're in this position.. I know it well. All I can say is sometime my fear has been confirmed, but not always.. You just don't know until a medical professional can confirm so I'm so glad you're seeing Mr S tonight. You have to think IF all is well, then your baby will be happier if you are. I find music can help reset my state of mind .. Even classical like pacobell?
Take care and let us know what he says. Will be thinking of you.
Determined - that sounds good.. I know for TSH it just had to be under 2. But those damn NK cells as you say.. What a shame the usual drug combo isn't cutting it. Hopefully another will.. What's the next step for you?
I've just had my other arm punctured today for blood tests and hanging about to see a doc about my back as still sore to walk. Today is when my growth stopped with my longest pregnancy so v glad I felt a small wave of nausea this morning - scan at 0830 tomorrow so really hoping this is different. X

Thanks ladies, very useful. My tsh had gone down so that's prob why I don't need it (1.8 and 1.5) antibodies were 700 and now 300 so I feel the changes I have made have worked! Just these damn nk cells not really going down with il and pred! Oh well!

Seeking/rosa know there isn't much I can say but try to distract/stay positive! It's so so hard though I know xx

Had more brown discharge this morning, it seemed to tail off a bit and now it's definitely darker. I'm absolutely terrified. Why can't things just be straight forward.
Seeing Dr S tonight - I'm so scared he's going to tell me it's all over.

Hi Determined - my thyroid antibodies were 320-something. TSH was 4.2 and 50mg brought it to 1.6.. Not sure what the antibodies are now. Can double check if you need exact.
My intralipid and pred combo was best at bringing everything down I think. Would love to repeat that Mr S appointment again when he went through it all now my knowledge is a bit better actually.
Hope you get a plan you feel good and confident about soon. The uncertainty and limbo state is one if the hardest things.
I don't feel I've the right to be sad right now but am struggling quite a bit- have a really painful lower back and had lots if pains in groin area as well as where I think I've cysts. Over did google again and just not sure if should be worried. Next scan Fri and if all ok will do Harmony bang on my 10 week mark. No idea how worried I should be about results as know my age ups the risk from the start.
Hope - if you're about .. Where did you get Harmony done and when?
Hope everyone else ok x

I know it's so hard! I think now that ur getting closer to ttc ur thinking everything through again! It's enough to drive us all mad! I'm trying to not think and just trust my specialist! (But have obsessively googled last week even though I said I wouldnt!)

Thanks trying...I haven't actually got my second tests results as left it all with Dr s as going ahead with more tests is not an option at the moment. (Told over phone) The ils and steroids didn't bring mine down enough unfortunately...I'm don't think I can do ivig as it doesn't feel right, guess I'm trying to work out if it's my only option?!

Some days I don't even know if it is even real!!

Hi determined. My ivf place does steriod and intralipds not ivig. But argc in London and mr gorgy does ivig. If u look at ur NK cells it says how much ivig/steriods and intralipds bring down ur nk cells. As long as the steriod and intralipds bring it down enough to normal levels u don't need ivig.

Clexane-quenby uses this so if u lurk on the miscarriage thread a lot of them are on it. I'm being put on it due to a mutation found (only my clinic test for it as they discovered if I'm not convinced if it's real or not but I'm going with it). but my consultant also said it helps build the placenta and make it stronger (but in more medical words!).

I don't think anyone really knows in this world. U just have to hope for the best! It's all so confusing.

Hey Rosa, quick q, do you know what your TSH and thyroid antibodies levels were/are (if you don't mind sharing)?. It's not in my plan but I am aware of the TABLET trial etc and that some women are given levothyroxine with hashis.

Also it seems like lots of ladies are given clexane and heparin despite not having blood clotting issues...

Also anyone had IVIG??

X

Thanks drttc and trying. I'm so rooting for you guys too and everyone who suffered RMC and has the courage to keep going.
Trying ... Mr S just said to double the cyclogest ... Didn't change the asprin. It's difficulty managing input from more than one consultant. I'm in that boat too and had to increase levo now decrease. Mr S has the edge on knowledge and experience so letting him trump the decisions!x

Hi ladies! On cycle day 7 now... No interesting news! Have caught up with the thread and will continue to lurk- but have decided to take a little break from thinking about ttc. It's nice to just tune out sometimes :)

Sooooo happy for you Rosa!!!! I think you know how much we are all rooting for you, and your triumph is our triumph :)

Sending everyone good vibes and I'll be checking up soon!

Hi determined. It's diff to mhftr. It's a mutation for the pa1 gene (!). My ivf clinic tests for it and my consultant at my ivf clinic is who I'm now under! He's put me on 500mg bd. And also hydroxy for it, but I'm to start that in a few weeks during my IVF as its for a diff reason to u guys. I'm to go up to three times for the metformin but currently can't stomach it - just having mild naseau all day long. I'm taking it mid meal and having 3 meals and a few snacks. Good to know it does settle/pass. I'm hoping to get it up to three times by Friday so I can start my IVF cycle. But if not I may have to delay things

Great u had a good time, hen parties r brilliant at making u rem what wonderful times u can have and what great friends u have!

Ah great news ladies I'm super pleased for you both

Not been on for a while as crazy at work (understatement) and organising my bests hen do (20 women who all loved to party!) think I managed 6 hours sleep all weekend but have not had so much fun for a long time!! Lots of big fat belly laughs and so still smiling now despite being knackered!!!

Hi trying-is PA1 like mthfr or am I confused with something else? How long have you been in it? I didn't get too bad nausea but a weird stomach. I made sure I ate it in the middle of my meal and didn't move up a dose until I was tolerating it well. (I started on 1500). Now on 2000 and even still had a weird stomach when I increased...I just persevered basically. Some women are better when not too much sugar, no booze, eat regularly, (which you prob already are) hope that helps xx

Which doc are you with now? I'm coming up to June which is our deadline to try again but I'm not sure where to turn?!?!!

Xxx

Congrats both of u that's great news. Really pleased for u both.
Rosa out of interest when u started spitting did Mr shehata say to stop the asprin? And did he suggest u bed rest or to just get on with things?

I'm getting a bit anxious that I'm following another doctors protcol, and although it's all the same drugs me s would suggest the timings and doses are slightly diff. e.g I'm on dex not pred-both steriods but not sure why my ivf guy prefers dex. And my ivf consultants wants asprin from my day 1 of ivf cycle, but shehata wants it In you before in ur system. So they are minor things, but I'm just panicking as the day gets closer!

I'm the same... Accu more for mind than anything else. He could see a bit blood which was cause of 5/6 week bleed and may mean I have more brown at some point .. But he didn't seem concerned.. I reckon he will want to scan you as he trusts his own results more obviously. Never know though x

That's good news too Rosa!! Brilliant!! I wonder if he'll want to scan me on Thursday ... ?
It's soo bloody stressful isn't it!
I can't wait to have my acupuncture treatment on Thursday morning, always feel a bit more relaxed when I've seen her.

Great news Seeking!!! Really happy for you :) I also had good news today.. Heartbeat and 8+5. He said the scan I had Fri was not as accurate. I am also being allowed to wean off pred from 10 weeks and if scan end if this week ok - which is after my longest missed miscarriage growth stop - then I can start to think about relaxing - a bit.. Until the harmony scan! One step at a time is hard!x