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

@Morgan236 I really feel you, I wish I could take the pain away. All that kept me going was that for me life wasn't worth living without a baby because its all I ever wanted since being a little girl. I think at my darkest times, thats all that kept me going plus talking therapy really helped. See what Dr Edge says too, she was a beacon of light in this whole journey 💖 Keep us updated and remember we're here if you feel like ranting, I found it very therapeutic 😅

@Jecca88 thank you so much and I am so sorry to hear about your losses 💔. What is your next plan with Dr S?

@Objectiontime thank you ❤️. This is exactly how I feel tbh. I never imagined my life without a child and I don’t see how it could ever be fulfilled without one. Thank you so much. Honestly so grateful I found this amazing group of people 💕💕

@Morgan236 nothing useful to add, but just wanted to send you a big hug and say how sorry I am. I hope all the success stories have provided a little bit of comfort. Take care xx

@Fletchasketch thank you ❤️

@Jecca88 lovely to hear from you too, I'm so glad this thread continues to be helpful for people, it's such a wonderful support.

@Morgan236 I'm so sorry, that must feel really tough to take. @Jecca88 is right, I had two chemicals on the protocol as well as a MMC and a natural loss at 6ish weeks. One thing I would advocate for is a Hyfosy - I actually had retained tissue and scarring twice after D&C's so if you've had three of them, it might be worth checking everything is clear and healthy for an embryo to implant. Fifth pregnancy on the protocol (the successful one) I'd had a chemical the cycle before x

@lozzmaxthank you for sharing your story. You have been through so much!! Did you have the Hyfosy after the chemical and before your successful pregnancy? When I had my follicle scan my lining was slightly too thin and Dr Edge suggested Hyfosy if I didnt get pregnant this round. I’m thinking because I’ve had a chemical she will 100% recommend that. Did you do anything else differently on your successful cycle? Xxx

I am so sorry to hear this... What devastating news. I really hope Dr S and Dr Edge can provide you with guidance on what to do going forward.

@TammyinCorkthank you ❤️

Just got my results back from Dr Shehata, and they are all within the normal range (NK cells count, activation marker, cytotoxicity).

I do have a bicornate uterus so am wondering if this might be a bigger factor?
Not sure what to do now. I was ready to go ahead with Dr S' treatments if I had high NK cells, but now that I don't, I don't see the point in taking steroids etc.

@Objectiontime Weaning off must feel so scary but as you say lots of people have come before you and done it successfully and there's no reason to think that you won't be one of these people ❤

@TammyinCork my husband had low fragmentation but I did religiously make him take Impryl and it improved his overall markers so it could well help your husband. Re the eczema - are you currently taking hydroxy? I got eczema on my hands when I first started taking it xx

@Morgan236 I am so sorry to read about your chemical :( so rubbish. I wouldn't say that the protocol necessarily needs to change as you fell on your first go, it might just need more time to embed in? I'm not sure if that is scientifically correct. There are things you can do for your lining and if necessary I wonder if CRP could prescribe you estrogen tablets? I hope you're okay 💕

@Jecca88 I was vegan for the best part of 10 years and I HATE eggs lol. But I am trying to make myself eat at least one a day for protein and it seems generally like something recommended diet wise. The beetroot & pomegranate is for uterine lining & blood flow - its marginally woo woo but I started doing it and now I can't stop haha. This is also helpful https://hsfc.org.uk/podcasts/beetrooting-for-fertility

How did you first injection go? I totally empathise with the overwhelm feeling, I had (several) massive cries around the time I started. I think I just couldn't fathom how I'd gotten to this point after 2.5 years and so much loss. My best friend also had her baby this week! Happy for her obviously but a tough week all round. Sending love.

@TammyinCork re your results - is bicornate uterus the same as a uterine septum? Has Dr S recommended surgery for it? They're on a scale aren't they - do you know how extreme yours is? Did Dr S also test for any blood clotting conditions? Were any of your results borderline at all? I wonder if he would want to test the NK cells in the uterus if he looked at blood this time? Sorry it was inconclusive - its sometimes more annoying to still not have answers xx

Yes, we hope the Impryl will work on my husband. Dr S has prescribed me 25g prednisolone and omeprazole, but no hydroxy, thankfully (my vision is not the best as it is, so I was worried in case he prescribed that)!

I haven't started any of this yet, and probably won't, since my NK cell results are normal and we haven't had the discussion meeting yet - that will be this Wednesday!

These were my results:
Absolute count: 104. Activation marker 0.50. NK cell 50 was 17% and the other one was 12%. NK cell 50 would be reduced most by 3mg intralipids (which I can't have, as allergic to them!).

I have a heart-shaped uterus, which a sonographer has pointed out. Dr S didn't say anything about surgery, but we will ask him about this on Wednesday! He has also recommended thyroxine, which I was surprised by! No blood clotting issues, as far as I could see.

Interesting re the thyroxine but not unheard of - did you have your TSH / TSH 4 levels tested? My mum has Hashimotos so I always try to have mine checked regularly x

@Morgan236 I had the hyfosy before my final chemical so I'm guessing that one was just down to chromosomal abnormalities. The only thing I did differently was the first dose of adalimumab - I was supposed to have a second but I never did because we got pregnant accidentally that cycle on day 7 which I didn't even think was possible. I got told on day 8 not to try that cycle as I needed the adalimumab so took it I think day 9 or 10 and thought there was no risk of pregnancy. Have you had adalimumab? x

@lozzmaxoh that’s amazing! I haven’t heard of that what is it? Xxx

@Morgan236 I lie, my successful one was also my first on steroids - I started them as soon as I found out I was pregnant x

@Morgan236 honestly I don't even know what it does - so bad isn't it, I just took everything Dr. S told me to. I think it's just another immunosuppressant. I didn't take it for my first daughter though after I'd had two losses but he said my levels of NKC had gone up since I'd had her x

@lozzmaxOh I am the same I just take what he tells me 😂. I have a meeting with him on Wednesday so I’ll ask him about that. Thank you for your help!! Xx

TSH is 2.55, which is on the cusp, and Thyroid Peroxase Antibodies are 144. I have read that this can lead to recurrent miscarriage?

I’m not an expert but I think they like your thyroid under 2 for TTC - I think 2.5 is fine for normal life but lower is better for TTC I think, so that might be why he prescribed you thyroxine. It definitely has connections with miscarriage so it sounds like a good thing to take

@Morgan236 so because my last loss was a genetic issue, so treatment stays the same with Dr S, but I am actually going through IVF with PGTA at the moment, so hopefully will get a viable embryo which we can implant and will do the immune stuff atm the same time.

@TammyinCork sorry to hear that you didn't get the answers you needed. I have still seen that some IVF clinics prescribe Pred without looking at NK cells - so it could help. I am curious to see what he says on weds.

@Hopeandfaith1990 ohh i love the egg story even more now. I thought it was like a secret myth. They do say you need to have lots of protein - someone mentioned 100g a day - which is bloody hard - even if i do eat meat. Do you know what I try and eat a beetroot a day with a little bit of olive oil, salt and pepper - i actually really enjoy it. Not sure if its as good as the juice.
Glad to know its not just me that is an emotional mess - i had another cry today after a scan. Injections are more than i thought, I am getting my husband to do them, but the Merifert is already painful and i haven't even got the one on day 6 which is a longer needle. Any Tips? So Day 1 scan we had 12 follicles, and today we had 20 (Day 5) she said it is great for someone to respond so well especially with a low AMH. Just need to keep doing what I am doing. I am finding myself so sleepy in the evenings and getting a good nights sleep. Overall - I am trying to remain positive - but lots of triggers around. My friend who i mentioned had her baby - she sent me the obligatory day with baby leaving the hospital pic and said 'thought i would appreciate' Honestly i was like what planet is she on. I just need to stay away from people atm lols.

Yes, he has prescribed me 25mg prednisolone a day, which I assume is to help with the thyroid issue (on top of thyroxine) since NK cells are all normal! I read that Amanda Tozer used to do the same thing for her patients with an elevated TSH and / or Thyroid Peroxase Antibodies.

@Jecca88 What an insensitive friend, why on earth would you appreciate that...honestly 😡 Just focus on what you are doing and look at the positive results you are getting 💕 One day at a time. Sorry I can't offer advice about the injections, hopefully someone can on here. Sending love 💗

Hey girl. Yeah I love beetroot so the juice wasn't a big deal for me but I think some people find it really gross 😂

The injections are a lot!! All I can say really is they get so much easier with time. I don't even think about it now and at the beginning I used to have to psyche myself up etc. Some people say ice for a minute or two before injecting to reduce pain. I also found that getting a bit of liquid on the tip of the needle before injection made it sting more, so I'd try not to do that but its hard when you're trying to get any air bubbles out! How much bigger is the needle?

The follicle scans sound great! On my highest day I had 21 so you're doing so well. I can't believe your friend sent you that, so bloody insensitive and tone deaf. I've kind of cocooned myself too, I just kind of want to protect my peace and not feel any stress ever haha.

I had my lining scan check yesterday and we are going to transfer next Monday! Can't quite believe it and feeling so anxious about the TWW already. Gah. Happy its all going to plan so far though (fingers crossed!!)

Hope everyone's ok. @Gizmo1983 how are you? Hope you're surviving the heat. x

Thanks @Deerdancer34 - I feel like i am overly sensitive - but it is a bit much to send that to me. Not the time to say anything - or if it would change anything tbh, but it is just nice to be validated by people that get it.

@Hopeandfaith1990 - need to look into buying beetroot juice now. yes i do numbing with ice, which has actually helped. Did you do the injections yourself? they said day 6 is more painful - the Fyremadel. Good tip on the bubbles. Yes I want to cocoon myself and come out the end like a butterfly, not sure if that will happen. What day did you have EC? were you ever at risk of OHSS?

ahh so exiciting about transfer. Did you have to wait for a period and then another cycle before transfer? and you're doing a medicated transfer? are they using the glue? IVF is a total other minefield.
I am thinking if i have EC next week, then potential transfer will be october? does that sound right.