Immune/NK Issues - aka Pred Thread no 25!

[Eeviee]

An introduction to this thread. It has been running for many years and has proved a saviour for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

Discussions cover immune issues, NK (natural killer) cells, thyroid issues, PGS and many many more.

Welcome to the group no-one wants to be in 

Tagging people from the previous thread but please tag anyone else I've missed.

@KittyKatSmile @FrannyAnny82 @HoldingOn2Hope @Crystal2020 @Countrygirl220 @HarrietM87 @williteverhappen @Wishing5tar @hrtbrk2 @KtAgs @Gooe @peperethecat @zoe16 @williteverhappen @mezgaski @VenusStarr
@Ultra26 @ceebee21*@Luckyducky2 @weddinghelp1* @Hippo20

@KtAgs god knows why they've changed it just makes it harder to compare ourselves. Have you had it done previously?

@Jellystar23 your consultant is absolutely right! Diet, a few lifestyle changes and supplements help improve. Dr S wants it done and I guess it is a bit of pressure at the initial consultation when they tick all the tests that need to be done. Tbf the other clinic also requested them too. My nhs consultant said it wasn't really necessary and the nhs test is sufficient but when you get to that desperate stage you do it all.
Impryl is the supplement recommended it's about £120 for 3 months supply you can purchase online and plenty of antioxidant foods watercress is really good to improve it and pomegranate too. Infact I brought DH some pomegranate capsules from the health shop too. No sauna's or jacuzzis, no heated car seats, no cycling or tight underwear. Limit caffeine and alcohol. Caffeine was the issue for DH he drinks 4-5 coffees a day and is now down to 1 plus a decaf too. Lockdown helped as i was able to support his dietary requirements with him working from home and me being home too.

@Jellystar23 I am glad we had the test as he did have dna damage so it gave us the chance to correct it. The only bummer is you either trust all the changes you've made have worked or spend money on a re-test like we have 8 months later. That was because of this last mc I suppose and Dr S suggested it was repeated as did the other clinic. Xx

@HoldingOn2Hope thank you! I’ll have a chat with my husband and see what he thinks. In typical RM unfairness - He’s a coffee loving bike rider 🙄🙈😂 although I have told him he’s only allowed 2 coffees a day now, and I have him on some antioxidant supplements. Will have a look into the ones you mentioned - thanks again.

I’m sorry the improvement never helped you this time but I’m glad your husbands has improved. It’s a miserable time anyway, let alone having to give up the stuff we enjoy. At least when you see an improvement you know it was all worth while.
I think aswell, when they can’t give you an answer as to why it keeps happening you look for anything and everything - and if me, praying in the back of your mind that there’s something wrong just for a bit of understanding. RM has made me crazy!

@HoldingOn2Hope Yes, my husband is taking Impryl. A friend's husband was taking it and recommended it to me. So he's been on that for 10 days now. But my issue is that I want to crack on with another round of IVF as soon as my period returns after this miscarriage. We have two embryos on ice and we want to get them PGS tested, but the clinic say that because they have already been frozen they may not make it through thawing, testing, refreezing and thawing again for transfer. So they think it's safer to do another round and get more embryos (hopefully). Is it risky to do that before my husband's sperm is within a normal range, so you think? We did ICSI on our last round of IVF - do you know whether that is supposed to pick out best sperm with the least fragmentation? I'm a bit confused as to the role ICSI and PGS have in helping with the fragmentation issue 🤔

@Everhopeful35 I looked into Icsi and pgs when I had my mc in June as we thought it may be our only option if it is a case of sperm damage. My nhs consultant said with Icsi the best sperm is selected and the best grade egg and then he would offer pgs too before transfer. My friends husband who is only in his early 30's had very damaged sperm so had no chance of natural conception they had Icsi with Dr Gorgy and were successful and now have twins.
I think for us as the baby has tested normal and DH's sperm has improved a lot so it's probably a case that it's carrying the pregnancy for me - which is crap tbh as I keep thinking what if I never can. Dr S said hydroxy does give success but it's trial and error.
It's advised to take impryl for a minimum of 3 months but that didn't stop us from ttc. DH started impryl in December so he's been on it for 8 months. Try and add lots of antioxidant food in his diet - a lady i talk to on insta suggested that to me and I'm sure it's played a part. Pomegranate and watercress. My DH hates watercress so I add it to his juice smoothies 😬 xx

@Everhopeful35 I've just read back at your earlier msg and 16.9% is only slightly borderline so I would continue impryl and make a few lifestyle changes (no saunas, hot baths, heated. At seats, reduce caffeine) while you are ttc and don't let Dr S talk you into seeing a male fertility consultant. The way my Nhs consultant put it is that most men have some damaged sperm as do woman have a few bad eggs. Dr S went on at me at the first set of results and I said refused to spend thousands on seeing male fertility consultant and again he said to me in march we should consider but I said we were going to stay on impryl and see what happens. If the riots came back badly damaged fair enough we would have then looked into it more. 16.9% isn't worrying in my opinion but the clinics will disagree 💰 💰 as they like there tills ringing! Xx

Yes @HoldingOn2Hope we've had it done previously, 36% overall, 7% high. Requires improvement. Husband wasn't taking the impryl properly (he's crap at remembering stuff like that) and I got really cross with him but he's been much better since I sharpied the days on the blister pack. (Why do I need a child since I already have one? LOL)

My husband sounds similar @Jellystar23 but loves beer and bikes. We'd just splurged on an indoor bike for exercise in lockdown when Mr S delivered the news about that, oh and no red meat. Husband grumbled 'Why doesn't he just say stop liking football so he takes everything I like doing'. Needless to say I got my teeny, tiny, violin out for him :)

The good thing about seeing the urologist is hubby did have a urine infection he didn't know about so we got that treated. I think we'll repeat the DNA test soon and then if its not improved enough, check out a varicele. xx

Hi girls,

Hope you are alright!

After reading your last messages, I realized that the sperm of my partner has never been tested at all, as it seems that our problem is coming from me (the low ovarian reserve, low quality eggs, the thyroid disease and the antiphospholipid syndrome, of course). In addition, we get pregnant extremely easily. I am under the care of a great Doc at the RMU at UCLH.

Are these the resons why he was never tested? He only had his karyotype done (mine too).

I was just curious to know the rationale behind that.

Take care
xx

Sophie.

@KtAgs yes I agree to see a urologist would rule out other issues, I'm not sure if it's the same test but my GP sent him for some urine tests etc which were ok. If the results this time round had come back bad then would have considered seeing the consultant Dr S recommends but I think with the first time I felt like we needed a chance to put things right with vitamins and diet etc. All this is a complete mind f*ck and seems so unfair but even on a bad day I still manage to hold on to some hope xx

@Wireless77 I have tried Chinese medicine with acupuncture. A friend of mine was TTC unsuccessfully for years, went for IVF which failed as there were no healthy eggs, then she tried this Chinese medicine and went on to have a son conceived naturally. It didn't make any difference to me - I still miscarried at the same point- but that was before I knew about NK cells etc. It was Zhai clinic in Harley street if you wanted to google.

About the sperm DNA. My husbands wasn't great, about 34% damage I think, he started impryl and admitted he had been having 'painfully hot' baths 🤬 (we didn't have a working shower at that time) A couple of weeks later was our successful cycle so either he had a remarkable recovery or we got lucky, so it can be done, but if you think even with 34% damage means 66% healthy, so the odds are definitely in your favour.
@Sophfr17 I think the NHS sperm test only measures the number of sperm and how well they swim, which as you say your DP obviously has no problem with, the DNA sperm test is more to do with how healthy they are but it's only available privately.

Hi Chickjen, thanks for your reply, which does make sense :)

And @Sophfr17, if you did want to pursue it, you can get the sperm comet test without having to be in a private clinic. I always think its worth getting our partners involved in testing after what we go through. Just to rule it out because conception is always a 50:50 effort. x

You are right @KtAgs, i have an appointment with Dr M. early September. Hopefully I will be pregnant again by then... and I will ask him about checking my partner's sperm because indeed, we never know! And we have absolutely no time to waste ^^. I know he will be honest with us.

Hello there, ladies. I've been looking at this thread for a while and I thought I introduce myself. Firstly just I want to say I'm so sorry for all your losses. What a difficult experience to go through. But also how strong you all are to keep going with treatments and pushing through. I've also had RM, 3 and 1 chemical. My losses all happen at the 6 weeks mark, I've never seen a heartbeat on ultrasound. My last miscarriage happened in May after one year of ttc. It was devastating. So I decided to go and see dr S for testing. I've had my first appointment with him and now awaiting results. I'm taking progynova for thin lining that he detected on the day of our first consultation. Not sure if it's the hormones or what it is, but I feel very apprehensive about whether I made the right decision with him. I guess I would like to share this journey with someone who is going through the same kind of trials and tribulations.

@Lalaifa Welcome to the group! I thought I'd just say hi and send a virtual hug, as your story is so similar to mine. Three miscarriages and a chemical pregnancy, all since last June, and my miscarriages also end at six weeks. I'm with ARGC doing IVF now - even though we can get pregnant naturally, we thought we would try and control things with this route, but I ended up losing twins this time. I've now had my consultation with Shehata, like you, and have my follow up soon. I'm very nervous and not sure whether I've made the right decision either. How did you find him? It's so hard to know what the right decision is anymore, isn't it? Have you ever had NK cells testing or treatment before? I hope you find comfort from this group of amazingly strong women. I know I do xx

@Everhopeful35 thanks for the reply. I am so so sorry about the twins. It breaks my heart. Was it an IVF pregnancy?
We were also going to do IVF with the NHS in April as it took us ages to conceive. But the funding has been withdrawn because I conceived naturally in April anyway (the IVF was cancelled due to Covid). My hope is that Shehata will find a problem that can be fixed. Never been tested for recurrent miscarriage, only with fertility clinic under the category of unexplained infertility. The NHS did not recognise the chemical pregnancy I had, so after my third confirmed miscarriage, I said 'enough is enough'. Heard plenty of success stories from Dr Shehata, including people who had delayed conception but then went on to conceive naturally with NK cell treatment and have a baby in their arms at the end of it. I cling on to that hope. I'm very nervous about the results, not being able to conceive afterwards or having another miscarriage. On the plus side, I felt really good to be listened to for the first time ever and that the problem with the lining was flagged up. So feeling positive and overwhelmed in equal measures.
My consultation is on the 3rd of September, the day cant come fast enough!
In response to your question about Dr S, I did find him a bit blunt, but nothing else to worry about. I felt listened to as opposed as with the NHS. When is your follow up?

@Lalaifa I've also read the amazing stories about Shehata, but like you I found him quite blunt bordering on rude - that said, he clearly knew his stuff and he's seen so many people with recurrent miscarriage that I do trust his opinion a little more than my IVF clinic's. My follow-up is the day before yours on September 2nd, so we can compare experiences afterwards! I'm so so sorry you had your IVF withdrawn, that's awful. I think you're making the right decision, seeing Shehata, though. The way he put it to me is that three miscarriages is unlikely to be bad luck/chromosomal. If anyone can get to the bottom of it, he can. I keep reassuring myself with the fact that most people will get there in the end if they keep trying, however hard that is. Yes, my recent twin loss (five weeks ago) was IVF - they transferred two embryos and they both stuck. I lost one at 6 weeks and the other at seven. The other two miscarriages last year were natural. I had immune treatment with it too, but Shehata was critical of what they gave me (for example, I was only on 10mg steroids and his minimum dosage is 25mg). x

@Everhopeful35 let's hope that all our money is worth it! That's great that we can chat about our follow up as well. :)))
Are you going to still pursue IVF after the results from Shehata? I think I'll give it a try naturally first and if nothing is happening we will have to go private for IVF. I'm 35 so time is ticking!

@Everhopeful35 I think you're right, as much as he's quite arrogant and can appear rude especially after a rubbish scan or even mc he knows what he's doing. Yes the clinic pee me off when they don't return calls and I almost wanted to switch but something tells me that he's the one to put things right. I hope I'm not wrong 😬 he's not given me enough hydroxy 🙄 so I've waited all week for the clinic to call me and send me a prescription, it's these things that are annoying but I still have faith 🙏🏽

@Lalaifa welcome to the women warriors forum, I'm sorry for your losses and I hope Dr S gives you some answers xx

Welcome @Lalaifa sorry to hear about your losses. I've had a similar experience to you and have been under both a fertility clinic and RM clinic in the nhs, Also felt like I wasn't really getting anywhere and time is ticking. Like you we have our first consultation privately at Argc on 1 sept - clinging on to hope that they will have some kind of answer for us! I wasn't sure whether to go to dr S or not and then for some reason just went with ARGC as had heard good things. Who knows what will happen but it's great to have this group to share it all with and compare notes 😊

Thank you, @HoldingOn2Hope! At what stage are you atm? Are you also under Shehata's programme?
Thank you for your reply @Hazlet2 I've heard about ARGC, they also do immune treatment but with IVF ? Everything is confusing to me when you need IVF and when you don't, especially with unexplained infertility. Was that your diagnosis as well?

I'm very happy to have people to talk to in here as everyone I know seems to pop out children easier than they can breathe.

If anyone wants any advice on IVF with ARGC, I've just done it. Obviously, mine ended in a twin miscarriage but I do still think they are an excellent clinic. If you can, see Dr Sapna - she's brilliant and will give you a lot of time. I did the immune treatment with them, but Shehata said they didn't give me enough steroids (I had 10mg instead of his recommended 25mg). I was also on a concoction that included aspirin, Clexane, progesterone and IVIG drips. It didn't work for me and now they are suggesting Humira or Hydroxy, plus a few other things like antibiotics in case of womb lining inflammation. We have still yet to rule out whether this one just didn't work because we had a chromosomally abnormal embryo, too. Hoping those results will be back soon. The only thing I'd criticise ARGC on is that, if they tell you your NK cell levels are raised, they never really explain it. They gave me a number but didn't say whether that was high/really high/average etc and then just throw all the treatments at you. I think their approach is 'throw the kitchen sink at it and see if something works', which isn't a bad thing, but I get the feeling Shehata understands your specific levels and will explain that/what it means for you and recommend something more tailored. That said, we haven't yet made a decision as to whose treatment plan to go with. I'd also say that ARGC do IVF very well. They monitor you so closely and I think that's why they get good results. Hope that helps anyone who is considering ARGC, anyway! x

Hey @Lalaifa, I'm with you on the whole IVF thing - I've been confused about this throughout 🤪. At first I felt like IVF would surely just be a really expensive way to have a miscarriage (i.e. we know we can get pregnant although it seems to take a long time these days) but I guess the more I've found out the more I realise it's that having IVF is conceiving in a controlled setting for you to then have immune / other treatments in addition - and also means you're able to check the quality of your eggs and have embryos screened which is impossible to do if not having IVF. I could have got this entirely wrong (girls in this group please do shout if I'm talking rubbish!!) but that I think is the reason you might go with IVF even if you know you can get pregs - plus the time factor, I'm 36. Yes I have an 'unexplained' diagnosis currently (after 3 MCs - one missed at 10 wks and saw heartbeat), from the nhs. I'm on a list to be referred for a laparoscopy on the nhs as I could have endometriosis, however was told that even if I found out I had endo it wouldn't necessarily make any difference to my fertility outcomes. Again, totally baffled by that conclusion if I'm honest as I've heard multiple times that endo can cause MC. I guess what I'm trying to say is that I'm going to ARGC 1. because I've heard their success rates are high (despite them being a bit like a 'boot camp' and v expensive) and that they focus on immune treatments like dr S and personalise your treatment 2. I'm totally going on a gut feeling, it could be the wrong choice but I'm willing and ready to throw everything at this having had such disjointed, unpersonalised care in the nhs which was causing too much stress. I felt like I had to be the one in the know and chasing everything rather than the other way round.
The general vibe was 'just keep trying' and there are some tests I haven't even had like thrombopholia screening for example. Not willing to just keep trying without ruling everything I can out.
I may have the consultation and feel it's really not the one but we'll see. Hope that helps a little bit but I completely get that it's all really confusing. I'll let you know how our appointment goes and I'd love to hear about yours. @Everhopeful35 too...So sorry to hear of your twins 💔
X

@Everhopeful35 I think our posts just crossed! Thank you - that's so helpful x

@Lalaifa and I hear you - every friend / colleague / family member seems to pop them out exactly when planned, no probs! Having somewhere to vent or just to read posts of women going through the same thing makes it that bit easier and less isolating x