Immune/NK cells pred thread #34

[Hopeandfaith1990]

Hi all, started a new thread as the old one was full. Not sure if this is the way to do it but I've c&p'd the list of people on the previous one as much as poss:

Old thread here: https://www.mumsnet.com/talk/conception/5228367-immunenk-cells-pred-thread-33?page=40

@Jecca88
@Gizmo1983
@Deerdancer34
@Objectiontime
@SWMum9
@TammyinCork
@Newbeginnings22023
@Fletchasketch
@Morgan236
@CarpeDiem75
@ALittleLight
@MC8
@venusStarr
@Gizmo1983
@Carportforme
@Meg310532
@Newbeginnings22023
@recurrentmis
@hopefulH
@v60
@lozzmax
@fleur89
@motherofshihtzus
@sunflower360
@kea1990
@sprinkleofbabydust
@star2022
@rumandspinach
@ems123456789
@rainbowsunshine81
@mamaw05
@thornters
@elarcoiris

@Gizmo1983thank you!!

Hi all, had a bit of time away from the thread (mainly because of avoiding screens due to horrific back to school headaches!). Mental health has taken a bit of a dive since the failed transfer and being back in a waiting limbo zone again but starting to feel a bit better today. We're still waiting to hear if we can do another transfer this cycle, I'm currently CD9 so need to know soon ish although no sign of ovulation yet. Hoping to do a natural modified one this time so less medication.

@Fletchasketch so glad to hear your news and that the line is getting stronger. How are you feeling?

@Gizmo1983 😂 re the pessaries, I feel you. Can't believe you've managed to keep it quiet, you're amazing haha. I think if I ever get there I will be the same as you.

@Jecca88 How are you doing? Guessing you're feeling the waiting limbo pain too...

@Deerdancer34 How are you? Thank you for your kind messages before ❤

@SWMum9 That's so interesting about the hydroxy, I've been taking it for so long now I wonder what would happen if I stopped. I keep feeling like rebelling against all my medication because clearly nothing is working for me!

@Objectiontime wow 18 weeks, that is so amazing. How are you feeling?

@Hopeandfaith1990 Sorry to hear it's been a rough time for you, hope the sunny weekend helped a bit. Also hope you get some positive news about your transfer soon.

To be honest, I'm feeling okay- not pregnant in the slightest though I'm driving myself slightly bonkers with my fitbit and wondering why my RHR isn't going up more. I didn't have any symptoms in my other pregnancies though, so I guess that's to be expected. I know the Pred masks symptoms too. Have another accupuncture session this afternoon which I always find very calming and then intralipids the Monday after.

@CarpeDiem75 Have you tried probiotics? I've been taking this one which was recommended to me for about three months and had no issues since https://www.ebay.co.uk/itm/236278963980?chn=ps&_ul=GB&_trkparms=ispr%3D1&amdata=enc%3A18JR0rWsmT0im3z1VX689TA44&norover=1&mkevt=1&mkrid=710-134428-41853-0&mkcid=2&mkscid=101&itemid=236278963980&targetid=2361954446071&device=c&mktype=pla&googleloc=9045907&poi=&campaignid=21726791677&mkgroupid=167881213859&rlsatarget=pla-2361954446071&abcId=10034014&merchantid=5618366295&gad_source=1&gad_campaignid=21726791677&gbraid=0AAAAAD_Lr1e6R7UecHd7yOgPk2Gmu4D7K&gclid=CjwKCAjw_fnFBhB0EiwAH_MfZlyPmNqyC_NwAqrrNIMGTLsdL3QxFIQ_3Sr-X-2kmZzIo4SbmIjArBoC7hwQAvD_BwE CRP said that it was fine to use, but you may want to check with whoever you're seeing.

Lots of love and luck to all, hope you have a good week. x

It does take its toll mentally, this journey. Sending you a hug and everything crossed for your next transfer.

I am pretty good, thank you. Always a little anxious but all fine so far xx

Thank you @Objectiontime @Fletchasketch for your well wishes. Transfer is definitely not this cycle (although we will try naturally, god forbid I waste an ovulation 😂)

I love my acupuncture sessions and I actually wonder if that’s why I’ve found this month especially hard as I’ve not been able to have any sessions.

Try not to pay attention to the RHR @Fletchasketch I’ve been down that rabbit hole so many times and did endless googling. They aren’t 100% reliable and everyone’s RHR is different - loads of people with perfectly healthy pregnancies don’t experience a rise at all so it’s definitely not going to determine the outcome of your pregnancy 🩷 I know it’s so easy to obsess over especially when you can’t have a scan yet etc.

Sending love to all xxx

@Hopeandfaith1990 I hope you're feeling a bit better, I think sometimes the uncertainty of everything is unhelpful too. Now you know you will try naturally and then transfer Oct (if needed!), I always found having a plan made me feel a bit better. Wishing you well for this cycle!

@Fletchasketch Don't look into pregnancy symptoms, easier said than done! I found that when I thought I had pregnancy symptoms, I wasn't pregnant and vice versa. Plus I stopped looking at RHR because actually when mine rose it was usually before a miscarriage so I stopped myself looking. Unfortunately it's just time and waiting but in the end I took the approach of right now I am pregnant, I will deal with anything bad when it happens. Have you done anymore tests?! Sending lots of love 💕

I'm still waiting to start the letrozole, feeling anxious about what's to come but trying to take it day by day. Plus CRP were actually very good at reassuring me about how unlikely an ectopic is.

Anyway lots of love to you all 💖

@Deerdancer34 and @Hopeandfaith1990 thank you, you both speak a lot of sense. I had the same conversation with my acupuncturist and she made the valid point that I don't really want my rhr to be like previous pregnancies. She advised me not to do any more tests, so as things stand I'm going in for intralipids this week and then a 6 week scan in about 3 weeks, the idea of which is already terrifying me.

@Deerdancer34 I feel you with the anxiety- really hope that all goes well with the Letrozole.

@Hopeandfaith1990 glad to hear you're also getting benefit from your acupuncture sessions. I was deeply sceptical, but my accupuncturist is so wise and calming that it almost feels like a therapy session which is very much needed. All the best for this cycle.

Hope everyone is having a good week, lots of luck and love to all xx

You’re so right @Deerdancer34 when I have a plan it’s feel much better, easier to focus on moving forward etc.

Natural to feel worried about the letrozole but I’ve heard of so many good outcomes using it and yes ectopics are very rare. You could always have a Hycosy/Fosy before starting if it would put your mind at rest (if you’ve not done one already)

@Fletchasketch yes my acupuncturist is like that too, she’s v knowledgable about fertility and TTC so I think it’s just also nice to talk to someone IRL who gets it. Remember to tell yourself that every pregnancy is different and can have a whole host of different or missing symptoms, there’s really no point comparing. As hard as it is (and obviously we all do it, it’s just sometimes helpful to have someone tell you this 😂) xx

How are you @Jecca88?

You've been in my thoughts @Meg310532 sending love x

Hey ladies,

Sorry been a bit quiet, just having a nice break from the TTC but anxiously still waiting on the PGTA results. We have also been dog sitting lots, which is lovely but also solidifys that i can't get another dog for a long time as i miss my boy Archie so much and its just painful that other dogs don't bring the same feeling of comfort - which i of course know. Despite the hormones settling from the IVF - i am still crying every day - just feeling incredibly isolated and lonely and only really spending time with my husband and close family.

I had an appointment at the CRP yesterday with Dr Silva Edge - it was so lovely to see her and was so impressed with our IVF results - same for all the nurses - it just feels like they really care :) I was waked with a hefty bill as because i had a chemical pregnancy just before IVF on the same protocol - she wants me to add something else in for a frozen transfer - basically chuck the kitchen sink at it as she said she doesn't think emotionally we can take another loss. So had some more blood tests to check to see if i need Humira. I need to add Fragmin pre transfer and if my bloods come back and I don't need Humira - she wants me to have GCSF. Is anyone else on that? She has also upped the steroids to 25mg.

So for a Frozen transfer - I have all the supplements - except co-enzyme. 400mg of Hydroxy, 25mg of Pred, Inofolic, Progesterone, Fragmin injection every day, Intralipids, and potentially GCSF, and then who knows what the IVF clinic want me to take. Hoping to have a transfer in october. Booked a holiday to Pulgia next week - and i cannot wait to just get away and reset.

Hope everyone is ok. @Hopeandfaith1990 i am so sorry you can't do a transfer this cycle and i know a failed transfer must feel like another miscarriage :( been thinking of you.

Lovely to hear from you @Jecca88 and I hope you are able to get some rest soon - Puglia sounds amazing.

I'm sorry you're feeling isolated, if its any consolation I am very similar right now. For my non-IVF/TTC friends (who everything TTC wise seems to come oh so easily too) it just seems too 'big' to talk about and its such a personal and unique experience it seems pointless to even try and explain it to them. So I'm definitely keeping my distance a fair bit with my friends too. I'm pretty bitter at times at the moment which makes me feel guilty and awful but it just is the way it is atm. I know this won't last forever so I'm trying not to make myself feel bad about it. I hope you can do the same 💕

Wow that's a lot of meds! So you will be taking Fragmin, Humira (is that another blood thinner? What is GCSF?), the usual Pred, Hydroxy, Progesterone etc and all the IVF meds! You will definitely need a chart 😂

Thank you re the transfer. It did feel like an MC in a way - husband and I agreed it was much worse than a natural cycle not working but not as bad an MMC. lol. The things we get used to in this journey hey.

I totally know what you mean @Hopeandfaith1990 it such a complex fertility journey for us and having light conversations about it feel meaningless. I am also re-senting the 'so exciting' comments from people in regards to IVF, as you guys know conception is never really our issue, its keeping the baby and its not even half the battle, but i get it - people are just trying to hold out hope for us. I totally know what you mean about feeling bitter - i think thats why i am keeping my distance. Do you listen to the TWGGA podcast? they talk about 'ugly feelings' and make me feel reassured that is quite normal.

Did the IVF clinic give you Fragmin? yes thats the blood thinner. Humira is only if my blood says i need it. and the GCSF is for like bone marrow - some sort of immune thing. I know what you mean about it worse than a regular cycle, but not as bad as a Miscarriage :( awful comparison but its where we are hey.

So are you looking at another transfer October?

Ah do you follow Annabel Gurnett? I literally saw her video yesterday about the 'so exciting' comments and I felt so validated lol I've had it so many times, even my work HR said it when I told them about starting. I know people mean well but its not exciting, for the vast majority of people its a last resort after what is usually a very long journey of persistent heartache.

Yes I love TWGG podcast, the ugly feelings are v real and tbh mine are sometimes very ugly 😂

I've not been on Fragmin yet but I think I'm going to ask for everything. Yes October transfer if not naturally this month (we can but wish!!)

Have you had an approximate date for transfer yet?

@Hopeandfaith1990 oh I just went on and had a look at Annabels post - i can relate to that so much. Thanks for sharing - I’m now following.

I am head of recruitment at my company and work in the HR department - I have had it from everyone I have told at work. My go to is - ‘my issue isn’t getting pregnant it’s keeping it. But yes it is exciting and we are grateful we have a chance’

I recently became part of the warriorship
and sometimes join the Friday group chat therapy type things.

annoyingly I haven’t had a date - they pushed back my appointment and without my go pgta results I don’t feel I can push for it to be brought forward. Also my husband turns 40 in November - and want to make sure it’s a special time for him - I’m wondering if I wanna be going early pregnancy and that stress if the transfer works.

@Fletchasketch Thank you 💕I really feel you, I still feel resentment that other people get to feel happy going to a scan... Anyway just take it day by day... it'll feel like an age so try and keep distracted!?! Impossible I know but think I'm pregnant until proven otherwise! 💪

@Hopeandfaith1990 Thank you 💕I actually had a Hyfosy after my ectopic and amazingly both of my tubes were fine (even though the hospital were going to remove one... really glad I said no!) So a deep breath and see what happens! Hope you're feeling ok!

@Jecca88 Isn't Ms Edge fabulous, she was a shining light when I was at my wits end. Wowza that is a lot of meds to keep track of!! I'm glad you're going away, it'll be nice just to have time to decompress before getting started. It's a very lonely journey isn't it and no-one can really understand what you are actually going through. Everyone always says the cliché things of relax, it's nature's way (my first few miscarriages), is it your age etc etc Tbh people have no idea what to say, so I don't blame them but I cut them off, even some of my siblings because I couldn't cope. Just know it's so normal and we are all here if you just ever need to get things out, I did find this group helped to make it slightly easier.
Is your Husband's birthday early or late November? Can you have the appointment after his birthday? Sending you lots of love 💗

Oh and ugly thoughts, I was genuinely shocked what I could think! I'm gonna take a look at that podcast! Lots of love 💖

@Hopeandfaith1990 thanks for the tip- have also started following Annabel Gurnett. I regularly listen to the TWGG and find it a comfort. The last one with Georgie from Bake-off had me crying in the car though. All the best for your natural cycle this month.

@Deerdancer34 Thank you! I was actually in CRP today for intralipids. I've had some out of range test results on the wellbeing bloods which is a bit of a concern so waiting to hear if I need to change my medication needs to be changed. They wanted to check if the results were an annomaly so I had to have another set of bloods- basically a pin cushion at this point. You're right- I really need to distract myself, I'm off work for the next two weeks so will be getting out and about and seeing people. It's the pre-bedtime scrolling and googling that I need to knock on the head as I'll drive myself loopy that way. Pregnant until proven otherwise is the way to do it! Hope you're doing well today xx

@Jecca88 thinking of you, it sounds like it's been a rough time lately and hope you get those results soon. xx

Hello everyone, reading through what you have said over the last day or so and,of course, wishing you all well with whatever your stage and situation

@Fletchasketch Probably not relevant but one thing they did mention in my early bloods was a raised white blood cell level. They weren't overly concerned but it got flagged. Googling it (why do we do it to ourselves) I have found that it was almost certainly because of the pred. Pretty common apparently.

I'm still on 5 mg pred at 19 weeks and likely to be until 20. I put my details into co-pilot and asked it what Dr S would do, keeping in mind my allergy to intripilidd and tge fact that my repeat assat at 13 weeks showed a slightly raised level of baddies. It said Dr S would probably taper more slowly, possibly up to 24 weeks so I am a bit worried about fully coming off at 20.

By the way, anyone on pred had a flu jab! I didnt think you could have one due to compromised immune system but my mate co-pilot seems to think differently.

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

@Objectiontime thus is it here

@Objectiontime

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 🫶🏻

Sorry you've ended up here @SunsetVibe . Have you been able to have any of your MCs tested for chromosone issues / karyotyping? You and your partner can also have karytyping done which can identify genetic issues if you're worried about that. Otherwise, IVF with PGT-A might be an idea. Have you been on any other medications (like Cyclogest etc) for any of your pregnancies?

I had absolutely no idea or clue I had NK cells issues, so for me it was worth doing the testing, especially as I had been on several additional medications that should have helped a pregnancy (e.g. I kept losing them despite being on other meds, therefore I had an idea that something else might be afoot)

I don't think private clinics care if you do tests with them but IVF elsewhere, and you might not even need to tell them that was your plan if you didn't want to.

I'm so sorry about your recent loss (and all of the previous ones). At 37 you aren't running out of time, but if you're going to do IVF then an egg collection in a timely fashion is a good move. I think you could do the tests relatively quickly for NK cells and definitely get an EC in before Christmas if you work out the timings?

@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 💕

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

@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

@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