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

Gentle congrats to @lr12 and @hippo20 - I only use cyclogest at night as well. I alternate front and back to minimise bowel movement disruption and cervix irritation. Of all the meds, i really dislike cyclogest and only take 200mg. Good luck with your IVF @Everhopeful35.

Sorry for your BFN @HoldingOn2Hope. That really sucks. Especially as you've been given all that hope. Can you do something nice to treat yourself?

Sorry to hear your MMC is still ongoing @venusstarr. Like a couple of ppl mentioned, could someone give you the tablets? I think the rcog guidelines have changed with that. I ended up getting some last time as I still had really bad morning sickness after my miscarriage was confirmed. Its an extra kick in the teeth that is really cruel so I'm sorry you're going through it. Xx

Thank you everyone had bit of wobble today but just need to take each day as it comes and try to stay positive,
Gentle congratulations @Hippo20 sounds like we are on very similar plans are you having Intralipids? I start mine on Tuesday.
Thank you for the advice @KtAgs I’ve only used it last night and did not like it at all think I’d rather another tablet but never mind it will all be worth it in the end.
@Everhopeful35 glad the start of your treatment is going well fingers crossed for you xx

Gentle congrats @LRL12, @hippo20. Are you under Mr S? Has he given pred as well as hydroxy? I guess you'll be having the intralipids soon maybe too?

Sorry to hear @VenusStarr, the wait is horrible. Mine has been going on for about 4 weeks, I wish I'd just had a d&c, not that they offered!

Thanks everyone. @LRL12 and @Whyisthistakingsolong, I'm not on pred and not having intralipids. I'm a bit nervous about whether hydroxy is enough on its own but I'm at the Epsom NHS clinic and that is what they offer (they switched from pred to hydroxy because of covid).

My losses were both mmc. The first one happened naturally not long after I found out, but the baby had stopped growing 5 weeks previously. The second time I couldn't bear the wait so had d&c but then found it harder in some ways as it didn't feel real. I'm so sorry you are going through it now x

@VenusStarr I am so sorry you have to go through this once again and also wait to miscarry and see what treatment they give you at Coventry. Did you decide you wanted to see Dr Shehata in the end?

@LRL12 and @Hippo20 congratulations on your pregnancy. I really hope everything goes smooth for you.

@HoldingOn2Hope sorry about you result this month. Did you test early? How long have you done super ovulation for?

@Everhopeful35 I hope your humira shot works first time. Wish you all the luck with egg collection and the pgs testing.

@Whyisthistakingsolong I’m just on Hydroxy Cyclogest and start Intralipids on Tuesday,
And yes I’m with Dr S

X

@Lalaifa tbh I have no idea when I ovulated as Dr S didn't give me trigger due to too many follicles. I didn't track ovulation either cba if I'm honest! But I'm site by now I'd have had a + if it was to be. This is my 6th SO, got preg with my 5th but unfortunately went on to mc at 7-8 weeks. I'm on hydroxy too x

Hi Everyone,

I have been reading through this forum and was hoping I could join – this is my first post.

I am 34 years old and I am currently going through my 4th miscarriage – we started trying just over a year ago.

I have had all the tests and everything has come back normal bar NK cells so when I found out I was pregnant this time I started taking 20mg of steroids, intralipids at 5 and 7 weeks, 20mg of clexane, aspirin and 400mg of progesterone ( I only started taking them at 4.2 weeks and started lightly bleeding at 5 weeks so maybe I started them too late). I have been taking high levels of folic acid and vitamin D and the normal pregnancy vitamins for months now.

I honestly don’t know if I have two issues – an immune issue and potentially bad eggs too. I seem to get pregnant generally on first go so it has been mentioned to me that maybe I have an unfussy uterus that is unable to filter out bad eggs. Also its worth mentioning that all my miscarriages have been missed miscarriages.

I had my second pregnancy tested and they said it was chromosomally normal ( although it was a girl so some say this can be inaccurate), the third was monosomy 21 and I am having a d and c on Tuesday so will see what comes of this one. It also has been mentioned to me that maybe I should consider PGS IVF.

I have done so much research and read all the forums over and over again and I am not sure what else I can do or what I should do. I have emailed Dr Shehata to arrange an online phone appointment as I am not based in the UK to see what he says as I have read such good reviews and success stories.

I suppose I am just wondering if anyone else is feeling the same - that you could have poor quality eggs and immune issues or do you think your issue is purely immune? I feel like if it was one I could just focus on trying to fix that, but now I am wondering if I have both….

This really is such a shit place to be in and I am really sad that we are part of this club. I really hope and believe we will all get there eventually.

Thanks for listening…

@LookingforAnswers86 I’m so sorry you find yourself in the awful place too. I can’t offer much advice as I am yet to see Mr S but my mc history is very similar to yours. I’ve had 5 mmc, on my most recent I took all the meds you listed although I take progesterone from ovulation as some doctors here in the UK believe it can make the uterus more “fussy”. like you I also get pregnant first time, every time. Personally I think I have an immune condition. I honestly don’t think we could be that unlucky to fertilise 5 ‘wonky’ eggs first time. Plus my first miscarriage happened at 15 weeks when I was 23 so should have been peak fertility. I hope you can find some answers soon 🤞🏻

Something I’ve forgotten to ask everyone is if anyone has ever found the pregnancy ‘multivitamins’ had a negative effect on their pregnancies? I took them from my second third and forth mc but solely FA on my 1st and 5th which I carried to 14/15 weeks but the others were lost at 5/6/7 weeks. May be completely unrelated and a fluke but would be interested if anyone else has had a similar experience.

Congratulations to all those with recent BFP ❤️ I truly hope these are your rainbows 🌈

@jellystar23 - I haven't found MVs affected my pregnancy. I've been on them for all my pregnancies and lost at 19w, 12 and 10.

Welcome @LookingforAnswers86 but sorry you find yourself at all. I'm on my 4th pregnancy (first with Dr S) and I'm about 5 weeks. I have high NK cells generally which are also elevated in pregnancy. Have you had your AMH/FSH/Estradiol tested? The reason I ask through testing with Dr S, I have a 'excellent' AMH for my age (I'm 35) although that doesn't indicate quality. With that, my last two pregnancies were chromosomally abnormal. You haven't mentioned a partner (but 50% of issues in conception are to do with male factors) I thought it worth mentioning we tested my husband's sperm using DNA fragmentation and it was not brilliant. I had a hunch this would be the case but a shock for my husband as he thought if we could get pregnant it wouldn't be an issue. He was then on a strict diet and vitamin regime and hopefully that has helped this pregnancy 🤞🏼. I think i also have an unfussy uterus so take cyclogest after ovulation.

Most of us on the thread are being treated by Dr S in Epsom but a few are in his nhs clinic or under Dr Quenby. Those in his clinic start meds from ovulation (I was on ovulation intralipids switched from steroids because of side effects/2nd wave worries) and on hydroxychloroquine every day since May. Dr S' theory is NK cells don't wait for conception to start causing issues- hence treatment from ovulation. The women here are a wealth of info so hopefully you find your answers here. A couple of women have experience with PGS too. I'm sorry you're going through another miscarriage as well. It's good you're lovely baby will get tested too. I'll be thinking of you on Tuesday. Xx

@LookingforAnswers86 I'm so sorry you've found yourself on this group and that you're going through a fourth miscarriage. The ladies on here are so supportive and a mine of information, so hopefully we can all provide some comfort at this difficult time. I've had three miscarriages and a chemical pregnancy, but the only one I've managed to have tested was my most recent pregnancy. It was twins but after losing one at six weeks (it just disappeared on the scan - apparently called 'vanishing twin syndrone') we could only get the second one tested after a missed miscarriage at seven weeks. It was Trisomy 20. This was an IVF pregnancy, I should point out, and we put in the two best looking embryos (one was a 5AB blastocyst). I was also on cyclogest, Clexane, aspirin, 10mg prednisolone, thyroxine and IVIG drips. We're doing IVF to control the process/my aggressive NK cells and TNF Alpha rather than because we can't conceive naturally. But now that I've had a dodgy embryo, possibly two dodgy ones, we're doing PGS testing. Like you, I'm not sure if our issue is quality of egg/sperm as well as my immune system. I have two frozen embryos left and I'm currently doing a second round of IVF with the aim of banking some more for testing - I'm a nervous wreck about it because I'm worried I'll end up with none at the end, but I refuse to go through with another transfer without knowing if it's going to be an issue. My AMH is good for my age (I'm 36) and my husband's sperm fragmentation is only slightly above the normal parameters, so just hoping we had bad luck this time. But I've personally found myself at the point where I want to leave no stone unturned. I hope this helps? It's so impossible to know what the issue is and who to believe, so we're checking every box this time! Plus I have a new protocol of immune suppressants (we saw Dr S after this miscarriage for the first time and he's prescribed Humira, higher dose steroids, Hydroxy and intralipids). X

Dear all,
I have read this thread for a while and am in awe of your resilience and strength.

I have just experienced my 4th miscarriage and have taken the step of booking an appt with Mr. Shehata.

I am still struggling to accept the costs. I wondered if you wonderful women could let me know what tests Mr. S. needed at the first appointment because I am going to see if my GP will do as many of them as possible?

So far I have had:
FSH (May 2020)
LH (May 2020)
Oestriol (May 2020)
FBC (May 2020)
Blood Glucose (May 2020)
AMH (June 2020)
Sperm Analysis (June 2020)
Recurrent Miscarriage Clinic thrombophillia screen (July 2020)
Scan of my uterus to check shape and ovaries to check cysts. (July 2020)

What else would you recommend I try to ask my GP for?
TIA

@KtAgs I also have been told I have an unfussy uterus. Do you know anything about how taking cyclogest would help that?
Ps. wishing you so much luck with your current pregnancy.

Hi @notpsychic, my understanding is it can affect your lining and make it less hospitable to embryos/sperm - like the contraceptive pill does - so only the best/strongest embryos are accepted but perhaps someone knows different?

With the cost with Mr S, he will you accept some tests from the NHS but probably not over 3 months old. Mine were old so had to repeat them all and tbf the NK cell ones are the most expensive. It certainly isn't cheap, then you factor in drugs, extra investigations, follow up consultations etc. We're probably about 5k deep. But instinctively, I know its the right choice for me and my husband. He's the only person that gave me an explanation for my late loss. A lot of people grapple with the expense. I'm know a lot of people on the thread empathise with the cost dilemma. Let us know how you get on. Xx

@Jellystar23 @KtAgs @Everhopeful35 Thanks so much for sharing your stories and information with me.

@KtAgs I have everything crossed for you that this pregnancy is the one.

Yes, I had my AMH tested and it was on the lower end of normal for my age, It was around 8 – initially I was really upset when I heard but when I googled it and asked everyone said it is only a marker of quantity and age is the main marker for quality – maybe that’s not the case though in reality. We also had karyotyping testing for both of us and they came back normal. All our pregnancies have ended around the same time, about 7 weeks so again not sure if that is an indication of something.

Yes, my husband had his sperm analysis and DNA fragmentation tested – SA was fine and DNA Fragmentation was slightly over normal at around 18% ( they said normal was 15%) – so potentially somewhat of a factor too. What vitamins is your other half taking? It may be no harm for him to start some maybe.

Re progesterone post ovulation – next time we try I am definitely going to start post ovulation too. I wonder would it make a difference to start on a higher does, maybe 800mg versus 400mg or are you all taking 400mg?

@Everhopeful35 I hope your second round of IVF goes well. Agreed on the no stone unturned, it’s so hard when the experts don’t seem to know everything about miscarriages themselves yet / haven’t developed all the tests.

I have made an appointment with Dr S for the end of October.

@notpsychic sorry you find yourself here but welcome!
On the GP issue, I would say ask for liver function tests because Shehata will do them if they are not recent. So you can save some money there. Let us know how your appointment goes. Xx

Regarding Mr S bloods, (I have my appointment in two weeks) will he make me repeat all the thrombophillia tests? Seems pointless as those results will not change regardless of the interval between testing, plus I’ve been covered for any abnormalities for my last three pregnancies with clexane and aspirin with no success.

Has anyone ever been forceful and said no to repeating certain tests with him?
Obviously I will take his advice but I’d rather not waste money repeating tests and divert it to other tests/medication.

@Jellystar23 I am in the same boat. I only did NK cells testing here a few weeks ago but when I spoke to the clinic they said I would have to re-do them as they dont trust those sent to Chicago to be tested. Sigh, its alot of money twice. When I checked it seems other clinics Dr G and ArGC send theirs to Chicago too. Hoping this is the only one I will have to redo. Completely agree re clotting tests.

Hi all, had my first app today. Cost a lot in tests, but I found Mr S very reassuring yet direct. I didn't know that the early miscarriages which I've had and which he calls chemicals (loss before 6 weeks) are "harder" to treat. sigh has anyone had success under him with early losses on the current plans being offered?? He suspects my issue is autoimmune.. Like most people in his clinic I guess! X

Hi @Whyisthistakingsolong I had successful treatment. I had had 4 miscarriages prior to treatment and at least .2 chemicals where I only had positive tests for a couple of days. I had a 5th miscarriage under his plan then a daughter 20 months after first appointment. Good luck x

Hello All, not logged on for a while on here. Congrats to those who have positive results :)
I've started my g-f injections and over stimulated so the cycle was abandoned 🙄 just hope it's not the same again next cycle. I suppose the positive is that I had a lot of follicles :)
@Whyisthistakingsolong I had a very early loss on Dr S's plan and had a few months out and now back on plan. All my previous losses (3) have also been btw 6-8 weeks, although I didn't know I'd mc'd the first time until my 12 week scan.

@Mini82 Can I ask what time of the day you took Gonal F please? Or does it not matter? I start taking them on Monday but forgot to ask Dr S about timing. Sorry to hear your first month didn’t go as planned. Crossing my fingers for next month for you 🤞🏽 X

@Mini82 it's great to know you had a lot of follies! I also had too many and wasn't given trigger but tried anyway although it was a bfn. Good luck for your next cycle 😊
@Wishing5tar I take mine in the evening as that's what I was told by Geri/Dr S and it's the same time everyday so I set an alarm, sometimes I've been 30 mins or so late/early but generally take at same time. Is it your first round on gonal-f ?

Thanks @HoldingOn2Hope ☺️ Evening it is then. Yeah it’s my first round, AF arrived during the night so it will be Monday evening now. Slightly nervous but hopefully I’ll be okay injecting myself 🤞🏽 Any tips? X

Thanks @Naticle @Mini82. Sorry to hear you had losses on the plan, but I guess Mr S. can't work miracles. I'm dreading another loss, its so hard to go through, but we have to have hope!
I'm booked in for an MVA (NHS) on Friday... I've been bleeding for 7 weeks and the tissue is not shifting how long did people's cycle take to get back to normal after an MVA? I'm conscious of wasting months of fertility, and I'm nearly 37