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

Oh that's interesting about the aspirin! Although I suspect in my case it works as it was the only change I made and 2 cycles in I conceived and had a v dark line at 10dpo. And I did see a hb at 6 weeks (albeit measuring behind) so I do believe the drugs helped combat the implantation failures I'd been having with the CPs. But then again who knows?!

This is a lonely road, the threads on here are just so knowledgable it's amazing. I opted for generic testing with my ERPC so perhaps that might shed some light. Probably not though. If someone said to me in a year or two you will have your baby I'd be ok with that it's just the constant unknown that's so hard to deal with x

@Thumbellini I have just started the steroids and progesterone on the NHS for NK cells as my local hospital is Epsom. It may be possible to be referred there, I'm not sure? I had to wait 4 months but it worked out ok in the end as I couldn't ttc anyway til now due to dealing with Ashermans syndrome. I'm so sorry for your losses, it's such a painful and lonely road. Thank goodness for all these lovely women who understand.

I am quite confused about the aspirin, we had a private consultation with Raj Rai at St Mary's in January and he said it can increase risk of miscarriage, and Lesley Reagan says the same in her book. I asked my Ashermans specialist about it a week ago and he said a new study from St Mary's has indicated that it can reduce your chance of conceiving, so he advised me to stop taking it prior to bfp. But seen lots of people have successful pregnancies on it on these threads! Such a minefield x

Oh my god, how unhelpful! I have found my NHS experience to be ok, I was allowed to have the RPL after 2 CPs and my GP was very thorough with tests etc albeit a bit clueless. I went private to see the Miscarriage specialist on the advice of the EPU after the 3rd CP. He gave me the clexane/progesterone/aspirin just to see if it would work lol. He did mention NK cells but said it had kind of fallen out of fashion a bit. So I think I will see if he thinks it'll be useful in my case. I would happily pay if I thought these things would work but it's just so hard to know isn't it

@Thumbellini I have to say I have found the NHS completely unhelpful and dare I say obstructive. I asked my GP if she could help point me in the right direction of avenues to explore privately and she told me to go away and google it. However when I went back with my diagnosis and treatment plan she knew all about NK cells, pred and intralipids ( and will not prescribe anything either) I think it is literally a postcode lottery. Even my local RMC is based in the antenatal department and the consultants diagnosis of 4 miscarriages and me crying at him about how stressful I now find being pg that I'm worried I stress myself into miscarriage was 'I think you really want to be pregnant and your not'
Sorry rant over! ☺️

Thanks for the responses! Are NK cells ever tested for on the NHS? The test is offered at a private clinic here for around £700 so can definitely get it there if not. Have any of you got the steroids on the NHS? I have had the RPL panel done which I think tested for sticky blood etc but I need to recheck that. I was put on aspirin and clexane with cyclogest to help with implantation, as this was my original issue with the multiple CP but sadly didn't help the most recent one. So I think I need to explore new avenues. Of course we could just be unlucky but 4 in a year definitely suggests a bigger issue x

@HappyApple05 that is wonderful news 😄 I am sorry to hear you are being so sick and yet completely delighted at the same time 😂

@Thumbellini the first step is a blood test to check the NK level, then you take steroids from ovulation for 10 days and do a pregnancy test, if it is negative stop the steroids, if positive keep going till 12 weeks. I have some other factor too which causes chemical pregnancies, I think it's another kind of immune response and the blood test that picked it up was for 'TNF Alpha' so that might be worth asking about. 🍀

Hi everyone, I am just looking for some advice on the pred protocol. I have had 3 CPs and just this week a MMC at 8 weeks. This was with pogesterone aspirin and clexane. I am not based in England so don't think that actually going to see Dr S is an option but my consultant has mentioned NK cells to me in the past, so I'm wondering if this is an avenue I should perhaps go down. All other tests have come back normal for me, so we are very much unexplained. Do you have any advice on what questions I should be asking at my review appointment?

Totally understandable @ginandtonicformeplease. And that’s a great idea re: reflexology! It really does all add up to help support the journey. I grasped at restorative yoga and Accupuncture and I’m so glad I did as it really helped to balance me and keep positive. I loved the holistic approach alongside the science and your hitting up the nutrition too so covering all bases.

@Chickjen @Sunshineblonde1 From what i understand, as we achieved good embryos through IVF that then managed to develop enough for a heartbeat, it's more likely to be autoimmune problems on my part, or a very small chance that we have a genetic problem. While I'm making DH do everything he can to improve his sperm, I don't hold out much hope that I'll get pregnant naturally. I just need to keep busy and overhauling our diets is something I can do!

Another slight complicating factor is that I have epilepsy, taking several meds for that. No research has ever been done on ivf on women with epilepsy - everything seems such a gamble.

I've booked in for some fertility reflexology next week, I've never tried it before but I'm looking forward to it.

In really feel for you @chilliandlime, that’s an awful lot to deal with during a very upsetting and stressful time. So glad your coming out the other side now and can move forward with your next go 😘 x

Thank you @Sunshineblonde1, it's been really stressful on top of dealing with the mcs. You were wise to request a senior Dr, I wish I'd been less trusting when they told me it'd be fine and waited it out longer or had more rounds of misoprostol. It's cost us a lot to fix, but hoping we are through the worst now and it's onwards and upwards x

Sorry @ginandtonicformeplease didn’t tag you properly. And sorry = sperm and speed comet is sperm comet 😂 damn autocorrect!

And welcome @ginandtonicfor meplease wow what a journey it has been for you so far - big hugs! I think your going down the right line with focusing on improving DH sorry through nutrition and supplements. If your on Instagram there’s a wonderful lady under the name of Fertilitynutritionist she focuses specifically on nutrition for sperm and fertility health. She is worth a follow and gives lots of free advice! And as @chickjen mentioned the speed comet could be worth a test! So sorry your having to navigate such a complex path. Don’t give up, there will be light at the end of the tunnel one way of another! And still plenty of options for you x

Oh gosh @chilliandlime so sorry you’ve had to go through all that. The scarring was my worst fear when I had the D+C in fact because of that fear I requested a Senior perform it as I was worried that someone less experienced may bodge it up. Thank god you’ve been on the ball and managed to get it looked into pronto! Best of luck with Mr S’s protocol 💐 it’ll certainly help if the NK cells are playing a role in the miscarriages x

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

@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. 🍀

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.

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

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

@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 💜

@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

@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

@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

@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?