Immune/NK cells pred thread #34

@Hopeandfaith1990 🤣🤣🤣 I love this, you just have to laugh at how ludicrous it can all be! Let me know how you get on! (I might use it if it's a good price!!)

@Hopeandfaith1990 Oh, no it was private but they should still do it,surely!?

@Hopeandfaith1990 Ask them to email it so you can get the prescription from a local pharmacy and then you can give them the hard copy when it arrives. That's what I did, I also called the pharmacy beforehand because they had to order in the 300mg ones which arrived the next day. Would that work?

@SunsetVibe I'm glad you're doing therapy, that really helped me and actually I had to have an enforced break after my ectopic and that really helped too, even though it was the last thing I wanted to do.

I don't know enough about it all tbh because I was in a fog when I had all my early appointments & I don't want to give you wrong info. But I remember asking Dr S about kareotyping and he did say it was pointless because my losses were all early, so I think he meant it was immune issues. It would make sense in my situation I think because I felt it was my body not holding onto the pregnancy. I'm not sure what he would say about a 9 week loss for example. If you got a bit further maybe medications may help but I don't want to send you off down a wrong track or anything as I don't know enough about IVF etc because I never ended up going down that route but there are plenty of ladies here who can help there!

Superovulation is where you take letrozole Day 2-6 of your cycle to encourage up to 3 follicles to grow rather than just 1. You then have a scan to see size of the follicles and when best to trigger ovulation with Ovitrelle and then you're told when to dtd. I'm not sure what Duostim is, so don't know if it's similar to the above!?

May be worth seeing if you can get cheaper testing done to see if medications or something like Superovulation would help as it's less invasive but also I know it's tricky trying to balance time and money spent....

Love and hugs 💕
Ps Cannot believe you didn't get funding, sometimes you just feel so cast adrift when you want to be scooped up and looked after...

@Jecca88 that is a brilliant result, I’m so pleased for you. Hope you enjoy your well deserved break.

Thanks everyone for your kind words, truly! 🫶🏻🙏🏻

@Hopeandfaith1990 I didn't have genetic testing done to the MCs. I've had an appointment with the NHS fertility team and she basically said to do IVF with pgta privately and no point in doing karyotyping of the parents because it doesn't change future management considering the pgta. So I guess if I want to do karyotyping I have to do it privately.
I haven't been on any meds for my pregnancies, I did take baby aspirin for the last one which is the one that lasted longer so I was hopeful, but nope. Regarding timelines I think I need some time to heal but aiming for stim in Jan abroad. So I want to do other tests beforehand just to see.

@Deerdancer34 thank you for the virtual hug 🫂 I've had 1 chemical around 4w, then 1 at 5.5w, then 1 at 5w and then 1 at 12w (MMC, baby stopped growing at 9w-ish). Like you, I don't have a problem getting pregnant (this all happened in less than a year) but I can't keep them. So you say so many losses quite early on is likely immune and not chromossomal? 🤯
When you say Superovulation is that like Duostim for IVF? And also like you, I found the NHS advice and investigations quite useless as well (and I have a soft spot for them as I've worked 7 years in the NHS). Hence I'm feeling a bit lost, they basically said they can't help me or do more investigations (only have the clotting test pending now and then I'm on my own). So glad Dr S programme worked for you ☺️

@Fletchasketch thank you so much for the tips, I really don't want to pay 4k at the CRP if I can avoid it so will look into the cheaper clinics that you mentioned. Will also check that podcast for sure, thank you 😉

@Jecca88 they said I couldn't be funded in the NHS because I'd need to be trying for 3 years and it's usually for people that can't get pregnant but I can as I've had miscarriages 😑 I read the guidelines and it sounded like some exceptions could be applied. Having AmH 2 and after several miscarriages I'd expect to qualify for an exception as I probably don't have 3 years to try lol very disappointed.
I am considering IVF with PGTA next, but I'm scared I'll find out afterwards that failure it's mainly due to immune issues rather than chromossomal and I have to go back to square one (because of low AMH I probably won't even have any eggs to freeze). Hence considering doing the tests before IVF.
Well done on the 4 embryos, that's really great news 😃👏🏻 and enjoy your break 😊

@Taurus26 all the very best of luck with the PGTA testing 🤞🏻 we're considering a clinic in Spain but didn't ask them if they are knowledgeable of NK cells, that's a good point. I might do the test and then see. I'll check fertylitis if it's that much cheaper, thank you 😊

(Sorry for the very long post but I wanted to address each of you as you were so lovely! I'm starting therapy tomorrow to help process it all and gain strength for the next steps 💪🏻).

All the best to you all!! 💞

@Jecca88 Great news! Enjoy your time away!

@SunsetVibe I'm sorry to read about your loss. I've come across this thread when I was researching intralipids and I am in a similar situation to you, not knowing for sure whether my previous losses are chromosomal or immune. I've just done an egg collection in Athens with a clinic called Ark. The Dr there is very knowledgable and I went with them because he treats NK cells as well as doing IVF, and I don't have the funds to do multiple rounds with Kings (I'm 40 and so wanted to plan for not getting lucky first time and I'm not eligible for any help with the NHS as I have a 3 year old). So I'm awaiting PGTA results but I'll be doing a similar protocol Dr Shehata had me on (maybe not intralipids as my results with Dr Shehata were only ever borderline, although they offer them at Ark). Otherwise as someone else has said, Fertilysis offer NK cell testing too

Hey ladies,

just catching up again.

sorry to find you hear @SunsetVibe - it's a safe space. CRP is about 4K for tests, Fertylsis does the same for about 1.5K and you can send them off to Greece, through a pharmacy running the bloods. I have now had 7 losses, 4 of them with CRP clinic. Changed my meds several times and adding in something out. I too was told my AMH was low at 4.4 - have you had a scan to look at Follicle count - because AMH is not always the best indicator. I just went through IVF and luckily i did get it NHS funded. I paid additionally for the PGT-a. Can I ask why you can't get it funded? The reason i went through IVF was because i had a loss with CRP at 12.5 weeks and it was a chromosomal issue. So I wanted to ensure that doesn't happen again - even if the % is low.

@Hopeandfaith1990 that Bruce cake sounds wonderful and so impressed you managed to resist. You know what i have had colds and felt awful in some TWW and have been pregnant so know what you mean about immune system down lols.

Got my PGT-a results. So we tested 10 out of the 12 embryos (mainly due to affording it as its £450 per embyro) We have got 4 Euploids, 1 Mosiac and the other 5 are abnormal. Then we have the two untested still. I feel pretty positive about it and know we have 4 chances. Hoping that these are my two babies.

Going away tomorrow for my break and just want to switch off. xxx

@Gizmo1983 Ahhh, bless you. Yes, every twinge or unexpected change puts us in panic mode doesn’t it xx

@Fletchasketch So glad your results are ok! My WBC was always high and I never knew why but no one seemed bothered 😆 Ooo I'll have some lasagne please!

@Objectiontime thanks for this, yes my white blood cells were up too, so good to know it’s likely Pred related.

@Deerdancer34 the results were better on Friday, normal clotting although still elevated white blood cells. They haven’t suggested they change anything, so trying not to worry.

@SunsetVibe so sorry you find yourself here. It may well be worth looking into immunity issues, apparently they account for 1/3 of recurrent miscarriages. It doesn’t have to be with CRP though. Both Fertilysis and PlanYourBaby will run the tests more cheaply and get good feedback. I’d also recommend listening to some of the podcasts about immunology- there’s some good ones with Hannah Pearn- ‘Don’t tell me to relax’ which may help you to make up your mind. Wishing you all the best.

Hope everyone is having a nice weekend. I am batch cooking lasagne and going for a long walk to keep me busy. Love to all x

@Objectiontime no problem it scared me too I’m freaking out today as I’ve got cold feet and wondering why all of a sudden of having hot feet are they cold. Hopefully its nothing but after all we’ve been through u just never know x

Thank you Gizmo1983, I know I've been a bit of a worrier over this, really grateful for your reassurance xx

@Fletchasketch Poor you, its horrible having constant bloods. When do they let you know the results? Ooo make some nice plans when you're off!

@SunsetVibe Firstly a huge hug, I'm so sorry for all your losses. If you don't mind me asking, when did you have your losses? For example all mine were early (5-6weeks) so Dr S said no point karyotyping, said it was immune issues and then I had the tests for that (it does cost a lot and it is very off putting but then his programme worked eventually, so now its worth it!) Also the other thing worth considering is the NHS said to me to try progesterone and then if that doesn't work IVF. However my problem wasn't getting pregnant, it was holding the baby, so IVF might not be the next step for you at this point in time. There are medications you can try and then there's Superovulation too, so it may be worth trying to work out the possible cause, so you know what you need for you.
Sorry you'll be exhausted and this probably isn't the most helpful. Have you only been through NHS so far, have they made any suggestions at all? (I found them useless tbh, felt very cast off.) Much love 💕

Sorry for jumping in but I wonder if anyone was in a similar situation than me and can kindly advise. I have very low AMH at 37, 4 miscarriages. Only investigations done were in the NHS so they weren't comprehensive at all. I suspect likely chromossomal issues due to the very low AMH (and very likely low quality), so considering DuoStim IVF abroad.
However since not much was done to find the cause, I wonder if it could have been something else like immune response. So not sure if I should do investigations for this as well even if just to rule it out (although someone mentioned 4k at CRP which is quite discouraging).

Did anyone have very low AMH as well? What were your next steps? How and when did you find out you needed immunology support?
Also, how do private clinics take it if I ask for investigations but thinking of IVF abroad and not at their clinic?

I honestly feel so lost, the last miscarriage 2w ago absolutely broke me, and I'm not eligible for NHS IVF as I found out this week. I'm a bit desperate for guidance whilst panicking I'm running out of time. Any tips/experiences welcomed 🫶🏻

@Objectiontime

@Objectiontime thus is it here

Hey @Objectiontime i read an article written by dr shehata and he says the latest he has people coming off steroids is 16 weeks so you should be fine x