Immune/NK issues - aka Pred Thread no.20!

[harrietm87]

Hi all, thought I'd get the ball rolling on the new thread.

Welcome all with immune/natural killer cell issues.

It's been a while since a new thread so thought it might be helpful if we all added our stats:

I'm harriet, age 30, TTC#1.
3 mcs (2 at 5 weeks, 1 mmc at 9 weeks).
Hypothyroid and high NK cells.
Cycle 2 on pred!

Luna you're so right! And thanks for your lovely comforting words 😊
I would post a pic of my super gut, but wouldn't want to offend anyone. Just started taking fibogel and guess what... that critter bloats you at first too!!! Violet from Willy Wonka better move over, there's a new ball of bloat in town 🐡🌝🏀🎈😂

Stuck, yes pred solves it again! I have a theory that NK cells actually don't exist, but just having pred usually sorts whatever mystery issue you have, out .... lol

Xxx

Hairy moonface piggies unite 👨🏻🌝🐷❤️

Ha ha luna the moon and pig sum me up!!! Haven't had any extra hair yet though thank god. My pred symptoms have been hunger, weight gain and bloating. The bloating is a killer as I'm fat enough at the start of the day but then twice as fat by the end! Had an actual bump last night!

justla I've had the odd wave of nausea but it passes quickly. And I'm exhausted and sleeping loads, though apparently progesterone makes you drowsy so that's probs why! 8lbs does not sound bad at all - dread to think what it is for me - and I'm sure won't affect the little one in the slightest. Good luck with today's scan!

redpanda welcome. I have hashimotos too and had 3 early mcs. The NHS weren't interested in any link between the mcs and my thyroid because my TSH levels were good (I've had it since 16 and well-controlled) so I had private tests with Mr Shehata and he found I had aggressive NK cells in addition to high thyroid antibodies. Everyone with hashis has high antibodies (that's what hashis is) but I think my losses were caused by the combo of that and NK cells. Apparently NK cells can be triggered by a pregnancy so it's common for people to have a normal first pregnancy and then have mcs after, which may have happened in your case? Now I'm being treated with prednisolone and intralipids and it's still so early days but I'm 6+2 and have never got this far before and I'm sure it's thanks to the pred! Mr S is expensive though and you've only had 1 mc (sorry don't mean to minimise how awful it is in any way) so there's every possibility it was just a one off. If you can afford it (tests are about £2.5k) then I'd see Mr S, but also may be worth trying again? NK cells also seem to fluctuate - after a predded up pregnancy drttc is now going drug free and it's all good!

stuck so glad it's all going well!

Hi panda,
Sorry you've suffered loss too but I hope you find comfort in knowing you're not alone. I agree that MrS would be a great place to start to get some kind of plan in place.

Just I'm sure the weight gain will level out once you're off the pred. I've put on about 7lb because I can't stop eating!! I'm actually thinking of re-starting slimming world loosely to regain some kind of control. I worked so hard to shift the baby weight from Tallulah that I really don't want to end up looking like a pygmy hippo!!

I'm of the mindset that they shouldn't even bother with a tummy scan until 9/10 weeks. They hardly ever see enough, they have to do purely for protocol. But all trusts are different. I asked at my last hospital for them to go straight 'in' with the internal and they said they weren't allowed. I'm so used to the internal wand now, that like Harriet, I'm practically whipping my knicks off before I'm even in the room!!

Glad you have you're appointment with prof Quenby soon sheepy.

So glad everything is ok after your bleed stuck. Mr S is of the opinion that a positive scan at 10 weeks is VERY positive. He says most of the time a missed mc at 10 + weeks will show that baby stopped growing around 6/7 weeks. Rarely do they stop growing after 9 weeks. Which is why I think he likes to scan so often.

Fuel for boink fest (or at least that's my excuse) 🐷

Mmm luna my mouth is watering! I had fish and chips for lunch at 12 and I'm having curry for dinner...but don't think I can wait that long!!!

I don't know if it's pregnancy cravings or just greed but I've also become obsessed with pasta - eaten it every day this week so far. God help me 🐖🐷🐽

Joined yesterday and not quite up to speed with posting but here goes.

Jessica
Just 43 (old! I know! Feel embarrassed that even still trying!)
3 miscarriages, two early and one Molar pregnancy

Diagnosed with high NK Cells and am under Dr Shehata. Just completed first cycle of prednisolone etc but am also taking Hydroxychoroquine with a view to possibly stopping the steroids but am worried this form of treatment won't be as effective.........

Trying to stay positive and get in the flow of being a pill popper!

Grateful to have found others on the same journey - one that can be very lonely.......

Welcome, Take4. Sorry for your losses. Don't be embarrassed! This is not an easy journey and perceived time limits make it even harder. I have two female relatives who had babies at 43 and 45 and a friend who had her only child at 48 (all three kids perfectly well) 👍

Welcome take I echo Poppy's comments - there's no time or age or sadness limit here!! ❤️❤️

Harriet - 🐷🙌🍝🍝🥘🍟🌮🌯🍕🍖🥙🍲🍙 (but I'm not even pregnant, just pure piggy)

Yum Luna!! Looks like aphrodisiac food if I ever saw it!

Harriet, I had fish n chils followed by warm brownie at a restaurant on weds, my stomach was so bloated it hurt! Although the fatigue is annoying I feel like it's your body saying 'right you, slow down- I need to concentrate on making a human and I wanna get it right. I need all your energy please 😊'

Seeking, lol at your knicks comment.
Hope you're starting to relax a teeeeeeny bit more?

Take4, welcome!! You are not too old at all. We were just talking about Ginger spice kicking another out with no help but acupuncture at 44 and thinking of another and she's young compared to many.
I went for my dating scan today and I would say around 20-30% of the expectant mums there looked well into their 40's which I thought was great! So many older mums are awesome mothers, not only because they take the responsibility so seriously that they've waited for ( not that young mums don't ofc, but you know what I mean)

I'm currently sobbing my silly hormonal eyes out, mid writing this I got a call from Mr S office, harmony results came back low risk 😊 Also had my 11+4 nuchal and dating scan at hospital today and they dated my at 12+2! That's 5 days less of pure panic in my life!! Dare I dream this could be it?! Eeeek xxx

🎉 🎉🎉🎉🎉🎉🎉 just! Remind me, will you find out gender?

JustLa, congratulations! So you're officially second trimester? Any plans to reveal to anyone yet? I'm so pleased for you...and the results sounds great too.

I hope Mr S stretched himself to sound congratulatory and encouraging, not brusque as usual?!

Sorry for the late replies everyone, and thank you for all your kind words! I had to go for another test this morning at the hospital for Addison's disease but the nurse said she would call me if it was bad news to get me back in today. I've had no phone call so I'm hoping that means I'm in the clear for that.

Oh wow so much I don't know about! What is NK? And who is Dr S? Is she/he a fertility doctor?

JustLa, that is such amazing news! So pleased for you!

Hi Red, just looked up Addisons - glad its most likely you don't have that Hun!!

Dr Shehata is from The Miscarriage Clinic in Epsom, Surrey. Most of us here are his [private] patients! He very expensive but his record in treating recurrent miscarriage is excellent!
www.miscarriageclinic.co.uk

Most of us here have an issue with our Natural Killer (NK) Cells:
www.google.co.uk/amp/www.motherandbaby.co.uk/amp/pregnancy-and-birth/pregnancy/pregnancy-health-conditions-explained/natural-killer-cells-what-are-they

• we are almos all on steroid treatment to dampen and calm our immune systems so our bodies stop killing the implanting embryo 🙌

You can get this looked into through NHS as well - although in my case they wouldn't have found what Dr S did, as my NK Cells are a normal amount just very aggressive - the NHS doesn't test for behaviour of Cells, just the amount

Over to the ladies for more details! Im awful at explaining!!

😂

Thank you so much for explaining all that Luna. I'm so sorry to hear that most of you have NK cells and I'm so pleased that Dr S has so much success. I'm hoping for all of you that it's a success for you too.

I am so pleased that it seems unlikely that I have it too. Just so relieved!

Welcome Red!

My turn to be ovu worrier Tee & everybody!

So I took the Clear Blue Digi Ovu test today and came up with a flashy face...

But according to Clue I'm not due to ovulate until Tuesday (day 15)... But according to Flo I'm due to ovulate tomorrow (day 13) 🤔

Shall I take Pred today, at flashy face?

Or

Shall I keep testing until I get solid face? Then bosh a Pred...

Or

Take a Pred on day 14 regardless of face?

Or

Have mental breakdown worrying about it?

Oh Lun!! How exciting!!
I personally think it's best to wait for solid face, as if you start taking pred now you may not get preg til solid face, and get a bfn at Day 10 of pred (as it's too early) and stop popping pills even though you're preg!
Does that make sense??
When had things been going wrong for you before?

BF alert!!!

Yes... I'm finding out gender. Omg it feels so real, as the email with gender is in my inbox. Hubby doesn't know email is there but it's his Birthday today so he will know soon. We are keeping it to ourselves (if possible) and don't even wanna post gender in here in case my family come across this thread googling Mr S stuff!
Btw, I didn't know the NHS tested for nk cells? Unless you get referred to someone like Quenby, that's good! My NHS OB looked at me as if I were mad when she asked about them, I said I don't really know or care if it's real or not, as long as I'm having this baby! Lol

Poppy, I think I'm officially 2nd trimester in 4 days time at 13 weeks, can't wait!!! But had to give myself reality check last night as my APS/Hughes can be dangerous all the way through.
We told hubbys mum this week and she was beside herself. We plan on telling rest of hubby family when back from holiday next weekend (I'm currently in Devon)

Fingers crossed for your Addison's disease results being negative/good Red 🤞🏻

Xx

Luna I would go with OPKs over any other sign, which would mean waiting for a solid smiley. I once had 8 flashing ones followed by a solid on the last evening! But usually it's fewer than that!

Reading and running (literally in a sec!) and will reply properly a bit later x

Awwww & what a bday treat DH will have today! Just I'm so happy for you guys! Enjoy Devon!

I normally loose them early early, 5/6 weeks, so being on the Pred at the right time seems really vital to me. I get the logic re solid face! Thanks too Poppy - agreed shall wait for solid! BF continues 😏

Oh god yeah normal NHS people have no clue, I meant Quenby etc. Althoigh Shehata is also NHS, but he said he's not authorised to do the behaviour NK test at St Helier's - said they just don't do it 😪

Wow I've missed a lot, this is a fast moving thread!! Welcome newcomers, it's so reassuring to join a thread with so many success stories! I'm in the middle of my first cycle of pred, so gaining so much insight here!
Just that's amazing re. your scan results!! So happy for you. I'm sure none of us will ever relax entirely in pregnancy, but reaching each milestone must be such a relief.
Luna I agree, solid face sounds like a good bet to me! Funny, I ended up ovulating earlier this month too, our bodies are chomping at the bit!! 😂

Anyone interested in visualisation? I've been setting aside some time in my 2ww to just completely relax and focus on my body accepting a pregnancy. Posting my favs 2 here. First is 18 mins and REALLY relaxing and calming. The second is just 5 mins so better if you're pushed for time and not necessarily wanting to get into 'the zone' so much, I like the positive affirmations in it x

Cheers Tee, agreed!

The NHS are shocking, it is only this time I have had the referrral and the help. But part of me thinks could this only be happening now due to some extremely monumental errors.
I am Sheepy, I have had 14 miscarriages and I am now eagerly awaiting my appointment with professor Quenby. I also have Antiphospolipid Syndrome and Lupus and Fibromyalgia. My current meds are diverse
Duloxetine 120mg
Plaquenil 400mg
Predisnolone 20mg
Asprin 300mg
Folic Acid
B12
The pred has been since last Miscarriage. Currently waiting for AF to show as had D&C and can also start charting properly

I agree that you should probably wait until the day after a solid face. You're likely to ovulate with 24hrs of a solid/positive opk. You want to be able to take the pred as long as poss before testing and taking it too early would mean stopping it early.

Welcome take4, sorry for your losses. But you've found a great thread for info and support.

It's my understanding that the NHS don't test for Nk cells. I had all the tests they offered and then went loaded with those results to MrS so I didn't have to pay unnecessarily for tests I'd already had.
While I know it's terribly unfair that they don't test, I do understand why they don't. I do believe though that it will be something that develops as the private industry gather more and more positive results. Treatment on the NHS requires blind testing and quite frankly I don't think many of us would be willing to risk a pregnancy with possible placebo drugs required for blind trials.

I am feeling more positive now. I think once I've got the next scan out the way I'll start to really believe it.

Great news regarding your low risk Just!! You must be so relieved!! Although I do think you should let us know the sex