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!

Tee, thank you, I've been in touch with the clinic to query the uNK test results. What MTHFR mutation do you have?

Luna, which mutation do you have?

Hi bean and sorry for your losses. My NK cells are the same as lunas - a normal number but really aggressive, especially in pregnancy - great! I've had 3 early losses, and now pregnant again on prednisolone, progesterone and intralipids. Early days but it's going well so far. A lot of us are treated by mr Shehata at the miscarriage clinic - he's expensive but worth it!

I am heterozygous for the mthfr mutation (i.e. I have one copy of the dodgy gene). Apparently it's not linked to miscarriage as 50% of the population have this, but it does reduce your ability to absorb folic
acid so you should take folate rather than folic acid in pregnancy. The most expensive pregnacare (ultra?) has folate so I'm just taking that.

I also have hypothyroidism and off the scale thyroid antibodies which may have contributed to my mcs, so worth getting your thyroid checked too if you haven't already.

I'm Homozygous as both parents carry the gene, and I'm A1298C...

Hi and welcome Bean,
I'm so sorry for what you're going through, it's so awful and there are only a handful of us the really understand what it means to have multiple losses xx
I think many of us use the research strategy as a way to regain some kind of control and a feeling we are doing something to stop this happening again.

3x Mc's here (2 were missed) 5/6 weeks, 11 weeks and 9 weeks (both of the later ones stopped developing at 6-7 weeks)
I then went to Mr Shehata in Surrey and am now 13+3 and seems to be going well 😊
I have high nk cell count (not that aggressive though, just loads of lazy murderous assholes hanging around) and antiphospholipid syndrome which is a blood clotting auto immune thing. I'm sure you've been tested for this, but if not you should be.

Seeking, you've literally warmed me all the way through! Thanks so much for letting me know about your heparin and clotting condition. I'm at the clinic at 2.30!! Are you having intralipids??? I'm in for drip n scan. Would be fun to see you in the mayonnaise room. You'll recognise me by my 6 month looking bump 😂

When a new person pops up, it reminds me what an incredible bunch of women I share this space with.
Strong, intelligent, resilient, dedicated, kind and loving. Those are qualities which make the best mothers in the world- and I'm sure you/we will all be just that.

Much love (must be having a hormone surge today 😂)

❤️🤜🏻🤛🏼💪🏼⭐️

I'll delve a bit more deeply into what the uNK cell testing actually entailed. Just checked the letter and it definitely refers to cell count only.

I've had all the standard recurrent miscarriage tests but I'm going to query all of those too as they totally missed thyroid at the time so that was done later. It's always made me wonder if anything else was missed or not carried out as robustly as it could be. I may ask for repeat testing because of this and the issues with my son's postmortem. I'd then be starting from a clean slate.

I'm taking folate rather than folic acid and have also made dietary changes such as cutting out alcohol and caffeine among other things. Been doing this since May (after being put on high dose folic acid until I had the results, and which I now understand isn't the ideal protocol).

Have any of your partners had the MTHFR test?

JustLa, it's amazing how total strangers can come together online to support one another. I feel so much stronger having posted on a few threads and read some very positive responses. You seem like a really lovely bunch on here

Bean, sorry for your losses. I don't think (as far as I'm aware) the uNK cell test covers activity which is why Mr Shehata does the blood test.

I'm just having a scan just so won't be joining you in the mayonnaise room 😂
I'll be the one with the DH with stupid hair! Haha! Also sporting a fairly sizeable tummy considering I'm only 10+4... I think it's more fat than baby though!!

Oh shame Seeking. I'll look out for a dodgy do then and say hi to any stranger with a poor hair cut 😂

Stupid hair? Tell us more! Bet it adds character and charm. People always ask me about cutting my DS's hair, he has crazy blonde mop of curls and I love it.
Anyone else suffered with indigestion after starting this medication?! I've literally been bed bound this afternoon with stabbing pains in my breastbone. Definitely indigestion as quite burpy too. Was eventually sick and now my whole stomach area is aching and I don't feel like eating at all. I would say AF arrived to add insult to injury, but having had the BFNs, it was very welcomed in the end! I know my cycles are clockwork as I'm a day early having ovulated a day early too.
No more currys for me! Might need to ask Dr S to increase my dose of Omeprazole! Weird for it to affect me now 5 days after stopping the Pred, but I guess the steroids continue to work as a few of you have mentioned the cumulative effect?? x

Oh dear tee, nightmare!!! You poor thing! Thought you'd managed to skip all Pred symptoms; damn!!

And I would be the same, after a BFN, AF is just what you want, on time, and things on the cycle staying tidy! But still a wee stab in the heart I know 😞

My DS is a blonde mop too too 💓 Like a cherub

DH has had all sorts of stupid hair dos, currently he's sporting silver hair! Haha!
I love seeing little boys with a mop of hair, it's so cute!!

Sorry you're feeling crap tee, hope you wake up feeling better! Definitely worth asking DrS about it, especially if it continues. Hopefully it just a one off.

Hello everyone. So glad to see so many bfps and positive scans! I just wish the treatment was more widely available.

Baby is three weeks old today. We decided to call her Ines (pronounced in-es, it's Spanish). She's starting to look like her big sister but she has dark hair instead of light blonde, she is much longer and skinnier and she has the most pitiful little cry imaginable. So I've nicknamed her 'weenie beanie'.

I can't believe the whole ttc/miscarriage/pregnancy saga is over. I feel a bit sad I'll probably never be pregnant again but I'm so grateful for my two little girls. I especially can't believe that after the drama of my first successful pregnancy I had a successful 'accidental' one, but Ines must be a fighter because she came out with her fist in front of her face haha

Ahhh Ines is a beautiful name snoopy! So glad you're all doing well! Weanie beanie! Haha!
How funny that she popped out with her fist I for the of her... back off NK cells!!

I already think I'm not sure I want to stop at 2 but equally I know I don't want to go through all this rigmarole again. We are so lucky to have one miracle (and you now 2!), I still haven't quite accepted that I'm pregnant with number 2 and yet I'm here thinking about more future babies! Bloody insane!

WOW has it been 3 weeks Snoopy! And I ❤️ the name Ines, it's on my list too!

I always wanted 3... but I can't imagine that; I can barely imagine getting this one at the mo!

Give that wee baby a kiss on the head, filled with all the warmth and love of all the mothers in waiting out there ☺️

Oh that sucks Tee, are you taking omeprazole before breakfast and pred straight after?
I had withdrawals after my first 9 day cycle on pred, just a lethargic fluey type reaction but no indigestion until later in pregnancy. Maybe some of us are just a bit more sensitive to it.
I'm tapering off pred now, this is Day 5 and I'm über emo. I don't think the majority of pred-ers get as strong effects though so don't let my experiences worry anyone, I'm a feeble weeble.

Snoopy how wonderful! That's a stage for us all to really look forward to and fight for. Congratulations, now you can forget all about it and enjoy a lovely life with your fam ⭐️⭐️⭐️

I keep thinking about how I want 2! Lol, gotta get through this sh*t fight first but can't help daydreaming about a cutie family of 4. Of course, I'd feel blessed with just one beautiful bub but you have to daydream 😊

xxx

Oh I just love the name Ines snoopy - great choice! Congratulations again!

seeking and luna I've always wanted 3 as well. DH and I both have 2 siblings and I think it's just a nice number. I'm gonna go for twins next time like my mum...lol. Seriously though I will be happy with 1 after all this.

luna how is the uti?

And tee how are you feeling? I didn't have any indigestion type symptoms with pred but guess everyone is different. Is it possible you've got a bug or something?

drttc haven't heard from you in a while - hope all is well? And just, poppy, sheepy and everyone else, hope you're having a great weekend.

I'm seeing some friends today haven't seen in a while and so worried about what to wear to conceal massive weight gain in this heat!

Morning! Maxi dress camouflage today harriet! They'll just think you put on a few pounds, and be far too polite to mention it lol!

UTI is getting better; still get that dropping sensation at the end of a pee and a slight temperature, but much better!

Day 7 of Pred and I've woken up feeling really jittery and a bit mental! Not sure how I'll be after 4+ months of this stuff - will I even be married still!?😱😱😱

Anyway - going to dump DS and puppy on DH and get some much needed time to myself this afternoon, I forget to take care of myself!

Enjoy the summer everyone, finally!

Hi ladies,

I'm sitting in bed staring at a big FAT positive test, slightly terrified.

When I last posted, you might remember I was vowing to go full earth mamma and try and find some courage for a 3rd go at a natural pregnancy (with help from some blood thinners) before diving into the pred.

Over these past 2 or 3 weeks my courage has waned, however! I booked in with Dr S again to get the drugs lined up for next month, but they told me the wrong clinic location over email, so I missed my appointment last Friday. It's another notch on the board of bad experiences with his clinic and lost / missed / changed results, to be honest.

I just want to be able to trust someone enough to tell me what the right treatment / answer is.

I had pinned my approach on the idea that my previous losses could have been caused by my blood clotting issue only. I'm still a little dubious about the NK cell diagnosis even though there seems to be so much success for everyone here... But now that I'm pregnant, I'm absolutely terrified I'm going to lose another if I don't take the Pred :(. But maybe it's too late to start taking it properly anyway!?

Argh. Any ideas / advice / opinions from you ladies are much appreciated.

BTW - I've been keeping up with all your the stories in the background, finding your experiences SO useful to read. Such a great community. Much love to you all and your moonfaces ❤️🌝

Aaaaahhh amy I was thinking about you earlier - hadn't heard from you in a while. Congrats!

What was your NK diagnosis again?

People here will have different views. I'm pretty sure that seeking didn't start taking pred until after bfp with this pregnancy but is now on it, whereas drttc, having taken it for her first, has decided to go au naturel with this one. Both are doing great!

I've been following mr s's plan and firmly believe I wouldn't have got this far without it. I've had 3 losses that never progressed beyond 5 weeks, never saw a heartbeat. Now I have, though still early days.

It sounds like you've been really unfortunate in your experience with the clinic and that's just not on when it costs so much. I haven't had any problems though so I think it's just been bad luck for you, and I wouldn't let that influence your decision as to whether to follow the treatment plan or not. I guess it comes down to how you would feel if you had another mc having decided not to try the plan - is it more important to you to be sure you can't do it without drugs, or to feel like you've done everything you can? And the cost is a factor too. It's not easy!

luna you're so right - maxi is the way to go!! Glad you're feeling better.

Amy! Congrats!!!! Terrific news!!! Harriet is right, we've got successes starting Pred late and not at all! So it's a totally personal choice... You are still an earth mother with the drugs, I think it's just cause they feel so experimental and sever that we panic... but there's no denying they do work, and for some it's the only way - for others, and maybe you, they might not be necessary... what goes your OH say?

Ah! Thanks Harriet and Luna! Hard to get excited though at this point, isn't it?

Luna - my other half has been quite skeptical of the pred and our bad luck experiences with Dr S to date, but is totally supportive and is leaving the decision to me. Blessing and a curse, because I kinda don't feel like I'm qualified to make this decision by myself... I don't even trust myself!!

My NHS doc said that my 2 early miscarriages (both at 6/7 ish weeks) are fairly normal, so if I hadn't paid for the tests & investigations I may just have continued into a 3rd pregnancy without worrying so much. And would have been none the wiser to any issues.

But now that I have done the tests, how can I justifiably ignore the advice!? What a mess I've made for myself, huh!?

Congrats Amy, great news!!
I can only echo what Harriet said in that I think you've just been really unfortunate with the catalogue of errors that have landed at your feet. I would definitely send them an email outlining your concerns regarding that.
Also - the decision is obviously down to you and DH, but I think what you have to weigh up is how you'd feel if you lost this pregnancy without having tried. If you feel you're willing to try it then I think just try the blood thinners.
Re: starting pred late... I did take them post ovulation this cycle but I didn't have enough tabs so my dosage wasn't correct. My 4th mc I started pred at bfp but lost it at 8+6 down to a chromosome fault. I firmly believe I'd have been ok if I hadn't had the chromosome issue.
I know the drugs seem scary but there is a lot of evidence it works, both with Mr Shehatas office and other private clinics. Would you still feel unsure if it had been prescribed by the NHS?

Harriet - maxi dress is the way forward!!