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

Yes Annaif- I was in the recurrent chemical pregnancy hell! 4 recurrent chemicals, never getting over 6 weeks or to a heartbeat. I'm now 15 weeks pregnant :) I know 2 other women who've had: 7 pregnancies with 5 being chemicals, 2 successful. And others with similar stories. The biggest common factor seems to be getting back up again, believing it's a numbers game that will one day be in your favour. So much easier SAID than done... :(

Seeking let me know what you end up doing re- meds. I'm not discharged as since I'm on double hydroxy until about 36 weeks (I think) I have to continue seeing Dr S every 6 weeks to check I'm not having any bad reactions though it's highly unlikely!

Hey snoopy! Boo to insomnia :( I'm not having it but up about 5 times a night to wee so hubby and I are really tired as well! How far long are you know? Sorry movement is so hard to track... Hang in there lovely x

Oh wow! That is a long time! I didn't realise hydroxy was that long term!
I've sent you a message about the pred too

Thanks for the thumbs up everyone- I guess I have to suck it and get on with it all if I ever want to have another baby (not moaning I know how terribly lucky we've been with our first born)
So for those seeing S privately throughout the pregnancy, is each follow up consultation charged separately and on the same rate as the first one?

Don't be hard on yourself Annaif :( this has been a painful and undeserved journey for you. Try to think of it as determination rather than sucking it up- remind yourself how strong you are!

Follow ups can vary especially if they include scans or medications. My last appointment was £280 whereas the one before than was £220 (both included a scan and different meds).

Annaif - sorry your appointment threw up so many worries, its totally understandable you are feeling this way.

I was thrown after the first time i went and tried to get my head around the consequences of the results and their implications on treatment etc. It s so easy to become overwhelmed, especially with your experience but if you can try and just break it down and take each day at a time it may seem more manageable.

It s also possible that your late loss wasn t immune related (as altho it wasn t done with the specilaist lab they still didn t find that abnormality with the placenta) In which case you could actually be in the easier to treat group.

Ultimately if you decide its right for your family to continue and try with the treatment then you will be doing all you can to be sucessful. You have both been so strong to be where you are now, esp when you re also being mummy and daddy to another LO. I hope things become a bit easier to get your head around soon. Big hugs.

Hello everyone,

I'm new (not sure whether to put a smiley face or a sad one!).

I got married last year and started trying for a baby in June - I had 2 chemical pregnancies (July and September) followed by a missed miscarriage in November. I had an erpc that same month.

Due to my age (I'll be 39 in June) I decided to disregard the nhs advice about just trying again and decided to book with Dr S.

I saw him yesterday for my follow-up after the blood tests. It turns out that while my NK cells are normal in everyday terms, pregnancy makes them aggressive. I was fairly okay with hearing that news - what I was surprisingly upset about was learning that I have an under active thyroid. I wasn't expecting it to be honest and I think it's thrown me more than the other result. I don't have many of the obvious symptoms although noticed my hair becoming coarse several years ago so maybe it started then. I think I'm bummed at the thought of needing to take medication for life (have always been one of those who never take a pill for anything!) ....

Dr S has started me on levothyroxine. I'm not allowed to get pregnant until the end of April (boo hiss) when he'll check my thyroid profile again (tsh is currently 6.67 but should be 2.0 or under). All being well I'll start the pred after that - results indicated that the intralipids will be most effective for me.

I'm feeling positive overall (hypothyroidism aside) and am very heartened by reading the happy stories of so many. I really hope to join in with those with a happy tale of my own :)

X

Thanks Hula and Drttc, it's just unfair that we have to go through so much stress over something that comes naturally to most people.... but being bitter about it doesn't help so chin up and looking forward is the only way to go.... I suppose when we started the process of booking with him I hadn't quite realized the sheer total cost of it all! Does anyone manage to get the meds prescribed by their GP or are they dispensed by him directly?

My GP knows my full history and has referred me twice to St Mary's already so hopefully she will play ball and help as much as she can....

Hi karryk, I am sorry to hear about your news and that you had to find yourself here [sad hug]
But all the ladies here are fantastic, supportive and very very knowledgeable so a definite source of information and great help emotionally.
My story is in some aspects similar to yours: 3 mmc's, one at 20 weeks and 2 at 8/9 weeks. St Mary's found thyroid antibodies last year but with normal thyroid function- was on the TABLET trial for 6 months until I lost the last baby.
Last mmc in Nov' 2015 was followed by 2 no EPRC's and since then it appears that my thyroid dipped dramatically. Was diagnosed privately by my endocrinologis in Jan' 16 of auto immune compensated hypo thyroidism and have been placed on 50 mcg of thyroxine since then. Due to have repeat bloods done in 2 weeks to see how my thyroid has reacted to the meds in order to adjust the dose accordingly.
What's your TSH level btw? Shehata told me he ideally wants to drop mine below 2.0 (currently at 5.4 :( )
Also, incidentally, how much thyroxene has he prescribed?

You may already know, but thyroxine should be dispensed for free if prescribed by your GP. In fact all patients with a thyroid condition are exempt from paying for their medication as this is considered to be an chronic condition which requires life long management. Not a great place to be in, I know, but it's helpful that once diagnosed, you will be managed properly in order to ensure that you are on the right dose. Speak to your GP about it, I went and saw mine after my diagnosis and was offered to do repeat blood tests etc.

I honestly believe and hope that this is easily managed for the both of us, it's always a bit of a shock to get such news and it needs time to process it all, but we are in good hands! And also, it could very well be the solution to our recent problems which means there is hope :)

Hi karryk and annaif, I just wanted to say don't give up! I was diagnosed with hypothyroidism by the NHS before any miscarriages after collapsing at work. Oddly enough I don't have thyroid antibodies, not really sure how that works? It will involve a few extra blood tests and seeing a consultant when you're pregnant but it will be ok.

drttc I'm 28+3, midwife appointment in a couple of hours! Time is dragging but I love her so much already I'd do it 1000 times over.

Hi karry,
Welcome to our group. I'm sorry that your circumstances bring you to find us
Sorry that you had a bit of a shock with your thyroid levels, but I'm sure that can be sorted fairly easily. And as Snoopy said, you will get consultant led care when you do get there. It seems that you get pregnant pretty quickly so hopefully once you get the go ahead from DrS and start your meds it won't be too long before you get your sticky bfp. Just look after yourself, don't put any pressure on yourselves and take it easy. Give your mind and your body some time to heal. Wishing you all the luck in the world.

Hi snoopy
I'm sure for you it seems to be going really slow but I think you're pregnancy is flying by!! When's your due date?

Hi seeking. How are you feeling?

I'm due May 15th, ages away! Haha
Erm, I'm at the hospital now and someone seems to have brought their grandfather with them to an antenatal appointment. He must be over 80, unless he's not with anyone and he's wondered in by himself?!

I'm ok thanks Snoopy. I swing from feeling very positive to feeling like I'm imagining it and that when I go for the scan on Friday they'll say, nope not pregnant! Friday is 6 weeks and I just want all the dates to match up and baby to be on track and see a healthy heart beat. I know that doesn't mean much yet but it's the first milestone. Then I'll think about the next, which is DrS on Wednesday.

May will be here before you know! Lovely summer baby
You never know - maybe he was the father!! Hahahahaha! More than likely he's just lost his way though!

Aw seeking I'm sure it's all going to be ok and I think it's helpful to break the process down into milestones, you'd go mad with just the end price as a goal. One day at a time.

All good thank goodness and only a two hour forty five minute wait but I am starting to get seriously scared about the NHS. A couple came in to the antenatal clinic because she was having contractions at 32 weeks and the delivery unit had turned her away because they didn't have a doctor!

That should say 'prize' not 'price'

Glad to hear all is well Snoopy :) I'm getting scared about the NHS too :-/ Wish I was rich enough to go private all the way!!

Okay I'm feeling like a bit of a bad person here... So there's a gay (lesbian) couple that had a really bad/rude reaction to our pregnancy announcement a few weeks. They were just completely avoidant and cold, mumbled a one word 'congrats' when we pursued them, and haven't spoken a word to us since (when they really should have). I've just heard (secret) that they had their first failed IUI cycle. Now I feel partly guilty about not feeling guilty... For them to begrudge my pregnancy after I've had to suffer four miscarriages, all because they didn't get a BFP their first ever attempt at ttc.... Argh. They have no idea the true pain of loss or even 6 months (or more) or BFNs. Of spending thousands and thousand of pounds that you don't have. I don't wish it on anyway- but surely, you can't be THAT bitter after ONE bloody month of trying?!

Don't wish it on anyone*

Thanks Snoopy everything is crossed.

It's a scary thought, I hope that lady sought help else where. There would be no turning me away! I would scream and kick until someone took me seriously. Through everything I've learnt it's that with the NHS assertiveness pays off. You have to be head strong and persistent! I'm sure you'll be absolutely fine

Shame on your 'friends' Drttc. You're right - they should definitely have been happier for you!! One cycle is nothing. Jesus it's a tiny fraction of the time we've all been trying! Yes it's probably frustrating for them but that shouldn't stop them being genuinely happy for you! Unfortunately some people are just a bit bitter and deluded as to how long this process can take! Oh to be a one shag wonder!

Hi everyone

Welcome to the new ladies - hope you find the support you need here.

Can't remember who asked but I managed to get my pred and progesterone from my gp on prescription which saved a few ££ but I had to get the hydroxy and I tralipids via Dr S.

Snoopy - believe me may will come round quickly, I found the last 12 weeks seemed to zoom by particularly as I was counting down the weeks left at work!

Seeking - I think small milestones are the best, in the early weeks I even broke it down to getting through the day/night. I feel like I was oregnsnt for a year as those eRky weeks dragged so much!

Try it to worry about the nhs the hospital I went to were fantastic - the midwives and drs were amazing and I fekt really looked after. The day I went in the labour ward was on red alert as they had so many people in labour they had to call in staff to cope - however the care never deteriorated I hope your experiences are similar.

AFM -all ok, think I've slowly adjusted to life with a bsby! He us 1 month old tiday! Goung so quickly!

Thanks Seeking! I do wish these things didn't bother me but the truth is they really took away from our moment because everyone noticed they weren't impressed. And finding this out just didn't justify it for me- if they announce 2 months from now I'm sure they'll be expecting that no one will take away from their moment either.

Hi sunny!! So glad to hear you're doing well with your little one!!

Hi Sunny Gald to hear all is well! One month already! Can only imagine how wonderful it is!

Drttc- give them a taste of their own medicine when they do eventually announce. Pay back!!

Haha Seeking- Well you and DH makes 2 votes for a taste of their own medicine lol! Maybe by then I'll have evolved into a super saintly preggo girl who can be the bigger person... Maybe

a taste of their own medicine gets my vote too!
rubbish and uncalled for reaction, for someone who's supposed to be a friend too

Hi ladies and welcome to the newbies. I'm sorry I'm a bit behind on everyone's stories but I hope you're all hanging in there!
seeking wishing you all the best for tomorrow, will be thinking of you!
I'm after a bit of advice- my cycle has been ok this time apart from my period has started today on day 25 of a normally 28-29 day cycle. This is what happened the last period I had before my cycle completely messed up. And that was my last super ov cycle. I was going to SO this cycle and had booked a scan, intralipids and review with dr S. But now my period is early my appointment is too late in new cycle and I wonder if I should not do SO again to give my cycles a better chance to go back to normal. Any thoughts would be appreciated?? Also has anyone found hydroxy changed their cycle? I stared it in October, but also got bfp that month but ever since my cycles have been iffy.
Getting so pissed off with all this!!
Cheers ladies xx

Hey Billy- I've been on double hydroxy since April 25 and it didn't affect my cycle. I had one really weird cycle my second month on Pred but that's it. If you have the patience, it may be good to hold off on SO for a cycle. However, I don't see how doing SO this cycle would be a bad idea either. I think you're good either way :)

GOOD LUCK SEEKING!!! Our thoughts are with you tomorrow x

Seeking I'll be thinking of u tmrw. Have all my fingers and toes crossed for u
X