Immune/NK issues - aka Pred Thread no. 22!

[HappyApple05]

Helllooooo dearies

Opening this new thread looking for a light in the tunnel during my journey towards conception. Would be nice to walk along with people in the same journey. To cut my story short, 3 miscarriages and referred to Mr.S, diagnosed with high NK cells and lupus positive, already on levothyroxine. After 2 weeks of staring at the med pack, I have now finally started on Aspirin, Vit D and Pregnacare plus. Awaiting Ovulation to start on Pred protocol.

Miscarriage history:

1. July 2017 - In my 12 week scan, found foetus with no hb (6 weeks foetus size), devastated! Had severe morning sickness, didn't predict anything negative. Took my son (6 years then) to the scan planning to break the surprise where he could see his sibling in scan.. We all broke down, opted d&c

1. March 2018 - started bleeding in 6 weeks and miscarried naturally.

1. July 2018 - spotted in 6 weeks, scan at EPU no pole, returned when 9 weeks along, still nothing, opted d&c

Bought the ovu predictor kit for the first time, counting days to use it. Any of you in the same position? Would be great to hear your stories and cheer each other up towards the destination. Previous threads were beautiful, so supportive but sadly the latest post was in Sep 2017. So most of them would have crossed the bridge. Decided to start on a fresh thread.. So here we are....

Looking forward to catching up... Take care you guys.... Plenty of baby dust to everyone

Oh no @chickjen that’s so annoying! Mr S can’t even get it? Has he had anyone else on this drug before?

Could you put a post up on mumsnet general board to see if anyone else has ordered it?

Wow that’s great news that you are progressing with the ZW protocol @KittyKatSmile. How are you feeling about starting it? Do you have support for your journey from family and friends? 🌺💐🌸

Thanks for the messages of support & for sharing your stories. I got the results back from my blood test which show I have elevated levels of NK cells. I also now know what pred means on this thread...! This has been suggested and wondered if any of you are also having IVF - did you have any side effects when combined with other meds? I had progesterone injections on my first cycle, which all seemed to go well - up until the point of a negative test

@Sunshineblonde1 he doesnt stock it himself as it's expensive and only has a certain shelf life. My GP said she has prescribed it before so I don't think it's particularly weird, it's annoying though that I've already been to these places asking for a price and no one realised then they can't actually get it. I've only tried the places near work though so I'll give it a real good go this weekend and then call the clinic on Monday for help if I haven't had any luck ❤️
It just occurred to me I should have been at the clinic tomorrow too, we could have had a party in the waiting room 🎉

@Maranello4 hopefully this diagnosis will be the difference 😊 What dose are they suggesting? @NixWix used IVF I believe along with the pred, and I don't think she had any particular side effects (and is now around 16 weeks or more) 😀

@chickjen, that is so irritating about the humira. Fingers crossed for you.

@sunshineblonde1; plenty of support although I prefer not to tell people really what I'm doing as I don't like the idea of people knowing when I'm 2 days pregnant. I've started seeing a counsellor and that is really helping. I'm excited to get started and just move on.

How were intralipids today? Any romantic stories to share?!

Love to you all
Ps @ maranello4, I'm starting ivf soon and will be taking everything I think. Interestingly, intralipids first even before knowing whether it's been successful or not and then pred later on x

Oooo that’s interesting that your getting intras at Zita West @KittyKatSmile I didn’t realise they offered that too. I’m glad you’ve got some support on hand with the counsellor and we are of course here too 🌸 such an immense journey you are embarking on 💪

Last intras today and met some lovely ladies on the same journey. One who had two lots of ivf without protocol which miscarried and then fell naturally and now is on Mr S’s protocol. I’m officially discharged from Mr S now but he was quick to mention planning the next pregnancy. Hold your horses Mr S let’s get this one our first 🐎
Will be continuing with the trips to Epsom though until I give birth as opted for the Full Package with Prof Akolekar - going belts and braces on this one! X

@Sunshineblonde1 I am delighted for you that you're discharged! Hurrah! And very sensible to be going belt and braces...

I've just got my thyroid tests back from Zita West. High. Wonderful. Why can't one thing go right for me?! And more to the point, why hadn't Mr S picked this up and treated me for this? It makes me very upset that my last baby died for nothing.

Sorry for the outburst. Today saw me (once again) standing on a street corner crying my eyes out...

Hey @kittykatsmile, if Mr S did your thyroid test and it was high then then he would have picked it up. Do you know what your TSH was from the test he did? Also every time you get pregnant it can mess with your thyroid and change results... just a thought. Same with NK cells. The results don’t necessarily stay the same they fluctuate. We never know for sure what caused our babies to miscarry in the past. 50% of all miscarriages are Ofcourse just down to random issues caused when the sperm and egg meet and that’s even before we go into dud eggs, bad sperm, NK cells, thyroid, progesterone, sticky blood etc etc. I’m so sorry that today has been upsetting for you 😪 At least now you can treat the thyroid and be in the best shape for the next try 😘 sending love and hugs 💕xx

@KittyKatSmile I'm really sorry you are having a tough time, do you know what the TSH level is? There are 2 kinds of high, one for women TTC and one for everyone else. Maybe you have just crept out of the TTC range and Zita West are going for the belt and braces approach too. I'm glad they are looking after you, they sound very thorough.
If it's any consolation I am taking treatment for thyroid and still miscarrying so unfortunately I don't think it's as simple as only due to thyroid, I wish it was because its so easy to treat, but like @Sunshineblonde1 says there are so many other factors too 😥 Big hugs to you ❤️

@Sunshineblonde1 congratulations! 🎉 Are you med free now too? What does profA do?

I had repeated implantation failure and really high NK counts with seemingly ok embryos and the pred /aspirin / inhixa / progesterone / drips protocol worked to give me my first BFP. It’s still very early days tho so not sure if it has been successful yet.

The presence of thyroid antibodis will raise NK counts yes. Mine was nearly 200 and with TSH and treatment my NK count has reduced accordingly.

I've just checked my previous test results from last year. When Mr S first tested it, it was 2.48. This week it was 3.9. Goodness knows when it made that leap. Yes, Zita West are very thorough (I need to have a Skype consultation with a nurse this week; can't make it in person as I'm overseas speaking in a panel )

Onwards I guess....

@KittyKatSmile you are officially the bravest person I know 😍 As if you didn't have enough on your plate already now you are public speaking too! I hope you are somewhere nice and get to relax too ❤️
The good news is you are still in the 'normal' range, but ideally when TTC it should be under 2.5. I think they will prescribe 25mg of levothyroxine, so something else to add to the list 😟 but the tablet is super tiny. Brace yourself though in case they want to repeat the blood test to check it is working before starting the rest of the treatment.
The other plus is I think @Sunshineblonde1 had similar levels and conceived the first month trying after starting the levothyroxine, and look how well she is doing now 😄

@Teddybear45 congratulations on a bfp! Hopefully the treatment has made all the difference and this is the one 😀 Are you still taking the meds now you have a bfp?

@chickjen, you are amazing, good memory of everyone's history!!

I am already braced for them to say we can't start until the levels are down; at the moment they are just scatter gunning me with information so I emailed them yesterday to ask to consolidate everything and confirm how I would proceed....

As for the public speaking, I'm not delighted! I think I agreed to it when I was pregnant and justified it saying it wouldn't be the most important thing to me at that time. Ha! That's gone well. I'm fairly terrified but it's too late now!

@teddybear45 congrats! Hoping this is it for you. Keep us updated

@chickjen you’re right my lovely! Mine was 4.8 at the beginning! Then it went down to 0.5, and now on my recent test it is 3! So again it’s jumping about and not in the ideal range. But bubba is still there 💕. I’m on 25mg but I think they’ll tell me to go to 50mg now it’s gone up, just waiting for the nurses to confirm as I only just got the test results on Fri. Long story short, @KittyKatSmile your TSH isn’t that bad, yes it needs to drop a little to be in the zone that fertility specialists advocate but it’s still in the ‘normal’ range in general like @chickjen mentioned. Once you get on the levothyroxine it’ll soon drop down to where it needs to be. 😀

Hey @chickjen I’m down to just taking the fragmin and the Levothyroxine so a few less tablets nowadays 😛 Prof A does in depth scans on the baby (like hour long ones!) and also monitors factors that can lead to preterm birth and still birth. He keeps a close eye on the placenta and cervix and blood flow to the baby. His scan package from 12 weeks to birth isn’t that costly compared to Mr S’s charges and we were so impressed at how in depth they are we figured ‘why not!’. We’ve spent so much with Mr S it’s in for a penny and a pound now 🤪 x

@kittykatsmile oh wow that is super cool though speaking on a panel. What’s the topic? I’m moderating a panel at a conference in May but it’s in London. It’ll be the first time my industry friends have seen me with the bump so it’ll be quite the entrance on stage 🤓 x

@KittyKatSmile good luck!! 🍀 The theory still stacks up, the speaking is not the most important thing you are doing right now, it's just that what is most important has changed. You have got this far, I'm sure you will nail this 💪

@Sunshineblonde1 wow, an hour! I thought if I ever got to the 'safe' point I would be so fed up of appts and Dr's that would be it for me, but that does sound pretty cool, you will know this baby inside and out before they are even here and the reassurance you get must be amazing 💜

You’d think wouldn’t you! But actually there is then suddenly a vast openness of nothing after all the ‘comfort’ scans and checking in that the likes of private treatment offer. For me it’s a little unnerving. 4 weeks between scans suddenly seems like forever! You just have this huge protective feeling over the bubbin and after all loses suddenly the extra attention is of great reassurance if that makes sense. X

Hi everyone, do you mind if I join you?
Quick history, aged 33, had 2mcs last year in July and December, then got Ashermans syndrome from the erpc followed by mva (the local anaesthetic version) I had at Epsom hospital three weeks apart in December. I had surgery 7 weeks ago to remove the scarring, went with Adrian Lower privately for that as he is supposed to be one of the 2 specialists in the UK and just wanted to be treated by someone experienced in Ashermans and couldn't bear the thought of being stuck on a long waiting list with the thought of it getting worse and risk of endometriosis. Now been cleared to ttc although my lining is still recovering a bit.
Epsom did refer me to their rmc after 2 losses which I was grateful for and had my appointment with one of Mr S's team 2 weeks ago. Borderline high NK cells so just started the pred yesterday, now in the 2ww.
You all seem like a lovely group of ladies and so nice to see some success stories xx

Hi, hope it's ok that I join. I'm 37, ttc for 5 years so far. Moved onto IVF+ICSI last year due to male factor infertility - DH has pretty bad morphology. We stupidly thought that getting that BFP would be the hard part. First BFP last summer, ended in MMC at 9 weeks, baby stopped growing at 8+1. Our consultant put it down to bad luck, did another transfer that resulted in BFN.

Took a couple of months off and had a shed load of tests, including thyroid, thrombosis and NK cells. All came back normal except for NK cells. 25% raised. Pre-transfer two intralipids infusion, started on pred and aspirin, then post transfer upped the pred dose, stopped aspirin and started heparin injections, plus of course the oestrogen and progesterone, and more intralipids.

Saw the heartbeat at the 7 week scan, all seemed well. At 9 weeks found that the heartbeat had stopped at 8+3. Booked in for an ERPC but passed it naturally in the end.

Our clinic (Zita West) has been great, but I'm wondering what else they can actually do, seeing as we've already tried all the treatment that's usually given. Our CCG doesn't fund IVF so it's all been on us from the start and I don't know how much more we can manage. I've tentatively made an appt for rmc testing at the beginning of June to see if there's something that Zita West missed, more of a second opinion than anything else.

In the meantime I've started DH on all the vitamins and diet changes that the ZW nutritionist recommended to try and improve his sperm (he's not enjoying his daily beetroot juice ) in the vein hope that we could conceive naturally.

@Sunshineblonde1 that makes perfect sense to me ❤️, I find 2 weeks a lifetime and more than enough time for my imagination to do its damage, I dread to think what a mess I'd be waiting 4 weeks. I can't imagine ever being relaxed or happy being pg ever again, even if I had a baby I'm sure I would be checking they are still breathing every 2 seconds. That is the cruelty of recurrent miscarriage I don't think others who haven't experienced it can understand, you don't just lose that baby you lose a piece of you and hope for the future too. Oh god, sorry, how thoroughly depressing I am 😂

Welcome @chilliandlime it sounds like you have really been through the mill 😟 I think going to a specialist for surgery is a really great move, I can't say I've heard of ashermans but anything to do with the womb/lining I would be terrified of surgery. But it sounds like that is thankfully all sorted and now you are in the safe hands of MrS 😀

Welcome too @ginandtonicformeplease what a horrid time you have had☹️. It sounds like you have tried most of the meds regularly prescribed in these situations, I wonder is it worth investigating your DH further? (assuming you haven't already?) Have you tried the Sperm DNA fragmation test or sperm comet, I think they go into much more depth than the usual count/morbidity test. They cost around £500 so would probably be much cheaper than testing you again. 🍀

Thanks so much @Chickjen. Ashermans syndrome is scarring in the womb or cervix most commonly caused by a d&c/erpc or sometimes by a c-section. It's rare but not as rare as people think and a lot of people struggle to get diagnosed. I diagnosed myself straight away at the end of January as two weeks post ovulation I had intense period cramps but no bleeding. The surgery confirmed my cervix was totally scarred shut and about 20% of womb was scarred. My appointment with the Dr from Mr S's team a couple of weeks ago was quite difficult as she was one of the many drs at Epsom I'd asked about the risk of Ashermans before the surgeries in December and they were all pretty dismissive of it. But hopefully am now in safe hands as you say with the Mr S protocol and fingers crossed the scarring won't come back x