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Original poster

Immune/NK cells pred thread #34

916 replies

Hopeandfaith1990 · 03/08/2025 14:52

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

Page 40 | Immune/NK cells pred thread #33 | Mumsnet

Hey Guys, starting a new thread as we have run out of space - hope i have included everyone and sending lots of love x {mention:venusStarr} {mention:...

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

OP posts:
Thread gallery
8
Original poster
Hopeandfaith1990 · 15/08/2025 16:33

Thank you @Deerdancer34 your message has really helped and you’re absolutely right. Worrying about it in advance just means being anxious twice if the worst does happen. I dragged myself out of the house and I’m making a kale salad for dinner to make myself feel less guilty about eating a whole pack of candy kittens yesterday 🤣 thank you again xx

@SWMum9thank you - I did a meditation from my IVF support app and am trying to manifest the manifesting now! Hope you’re ok xxx

OP posts:
SWMum9 · 15/08/2025 15:53

elarcoiris · 14/08/2025 18:35

Heya - I had similar after I was put on hydroxy, went through to see Dr Edge and she did a saline scan which identified a uterine polyp, which I’ve now had removed, and switched me from utrogestan back to cyclogest (I was on cyclogest last year and then I think they switched lots of people to utrogestan as it is taken orally). Something from that combination of actions seems to have stopped the mid cycle spotting (was bleeding on and off from ovulation until my period which didn’t feel conducive to a successful pregnancy and also was just quite inconvenient). Haven’t yet managed to conceive and am also slightly concerned that my ovulation sticks are now much less dark than they were pre-hydroxy, and my initial temperature rise (before starting cyclogest) is quite low. Basically I wonder if it’s negatively impacting ovulation and that’s why I haven’t got pregnant in the last few months that I’ve been on it.

Anyway, that’s a long and rambling message and I’m not sure how helpful it is to you right now as feel I haven’t fully got to the bottom of the issue nor know exactly what stopped my spotting, but understand how frustrated you must be and sending solidarity. Definitely speak to Dr Edge (if you’re under CRP) as she was really understanding and helpful when I was having these issues.

xx

Show quote history

Thank you for sharing. It’s really helpful to hear someone else’s experience. I’ve emailed the midwife and she said she will speak to the doctors Monday about my case. I know something is wrong. As it’s NHS I imagine anything will be slow so I’m going to ask about switching to the private CRP clinic.

@Hopeandfaith1990 sorry to hear you’re having a tough day. Miscarriage and struggling to conceive really takes any fun or excitement out of the situation. I totally feel you worrying about a loss. We have been through so much emotionally and physically. Sending you lots of love and manifesting that it will all work out x

SWMum9 · 15/08/2025 15:52

elarcoiris · 14/08/2025 18:35

Heya - I had similar after I was put on hydroxy, went through to see Dr Edge and she did a saline scan which identified a uterine polyp, which I’ve now had removed, and switched me from utrogestan back to cyclogest (I was on cyclogest last year and then I think they switched lots of people to utrogestan as it is taken orally). Something from that combination of actions seems to have stopped the mid cycle spotting (was bleeding on and off from ovulation until my period which didn’t feel conducive to a successful pregnancy and also was just quite inconvenient). Haven’t yet managed to conceive and am also slightly concerned that my ovulation sticks are now much less dark than they were pre-hydroxy, and my initial temperature rise (before starting cyclogest) is quite low. Basically I wonder if it’s negatively impacting ovulation and that’s why I haven’t got pregnant in the last few months that I’ve been on it.

Anyway, that’s a long and rambling message and I’m not sure how helpful it is to you right now as feel I haven’t fully got to the bottom of the issue nor know exactly what stopped my spotting, but understand how frustrated you must be and sending solidarity. Definitely speak to Dr Edge (if you’re under CRP) as she was really understanding and helpful when I was having these issues.

xx

Show quote history

Thank you for sharing. It’s really helpful to hear someone else’s experience. I’ve emailed the midwife and she said she will speak to the doctors Monday about my case. I know something is wrong. As it’s NHS I imagine anything will be slow so I’m going to ask about switching to the private CRP clinic.

@Hopeandfaith1990 sorry to hear you’re having a tough day. Miscarriage and struggling to conceive really takes any fun or excitement out of the situation. I totally feel you worrying about a loss. We have been through so much emotionally and physically. Sending you lots of love and manifesting that it will all work out x

Deerdancer34 · 15/08/2025 14:40

@Hopeandfaith1990 First of all sending you the biggest of hugs ever. It is not surprising you feel this way at all & totalllly normal. I felt completely broken, stuck in the deepest darkest pit ever, I can't even really describe it. Anyway, the only way I found to manage it was just to be really strict with myself and only think of one day at a time. If sht is going to happen, I'll have to deal with it then, I'll have no choice but there's no point making the early days sht too otherwise for me I just kept getting hugely overwhelmed. Its not really a method or very useful but it helped me slightly not get too swamped. Try not to think What Ifs or look to the future at the moment, just go with the process perhaps? And actually just talking about it, I think helps slightly too. You've got this 💪 Sending you so so much love 💖

Original poster
Hopeandfaith1990 · 15/08/2025 10:55

Hey girls hope you’re all okay 💖 I’m having a tough day mental health wise today. I feel like I’ve been pretty positive all the way through this IVF cycle but now we’re only 3 days before transfer I just feel so negative 😔 I feel like I’m scared of it not working but I’m also scared of it working because I feel like I’ll just be waiting to miscarry again 😩 sorry this is so depressing but haven’t really got anywhere else to put it. I think I’ve just really lost sight of the possibility that this will ever truly happen for us - like I can’t picture myself as a mum anymore, the vision has just been so ruined by infertility and recurrent loss 🥺 anyone else felt like this before? Xxx love to all

OP posts:
elarcoiris · 14/08/2025 18:35

SWMum9 · 13/08/2025 21:54

Hi everyone, I hope you’re keeping well!

I’ve had my third month of negative digital OPKs and mid cycle brown spotting when I should be ovulating.

This all started when I started my protocol 😢 which is hydroxy daily and pred/progesterone from ovulation (which I now don’t know when it is)

I see dr shehata in his nhs clinic and their only response is to keep trying until next month which will be 5 months on the protocol. I’m feeling very deflated with it all.

Did anyone else experience these changes on the protocol? The bleeding is so triggering from the MC, feels like my body is failing me

Heya - I had similar after I was put on hydroxy, went through to see Dr Edge and she did a saline scan which identified a uterine polyp, which I’ve now had removed, and switched me from utrogestan back to cyclogest (I was on cyclogest last year and then I think they switched lots of people to utrogestan as it is taken orally). Something from that combination of actions seems to have stopped the mid cycle spotting (was bleeding on and off from ovulation until my period which didn’t feel conducive to a successful pregnancy and also was just quite inconvenient). Haven’t yet managed to conceive and am also slightly concerned that my ovulation sticks are now much less dark than they were pre-hydroxy, and my initial temperature rise (before starting cyclogest) is quite low. Basically I wonder if it’s negatively impacting ovulation and that’s why I haven’t got pregnant in the last few months that I’ve been on it.

Anyway, that’s a long and rambling message and I’m not sure how helpful it is to you right now as feel I haven’t fully got to the bottom of the issue nor know exactly what stopped my spotting, but understand how frustrated you must be and sending solidarity. Definitely speak to Dr Edge (if you’re under CRP) as she was really understanding and helpful when I was having these issues.

xx

Original poster
Hopeandfaith1990 · 14/08/2025 12:31

SWMum9 · 13/08/2025 21:54

Hi everyone, I hope you’re keeping well!

I’ve had my third month of negative digital OPKs and mid cycle brown spotting when I should be ovulating.

This all started when I started my protocol 😢 which is hydroxy daily and pred/progesterone from ovulation (which I now don’t know when it is)

I see dr shehata in his nhs clinic and their only response is to keep trying until next month which will be 5 months on the protocol. I’m feeling very deflated with it all.

Did anyone else experience these changes on the protocol? The bleeding is so triggering from the MC, feels like my body is failing me

This is so difficult, I'm sorry and its annoying that they aren't giving great advice or support. Could you try doing the superovulation with them? Or having scans around your suspected ovulation days to see if they can get a clearer idea of what's going on that way? xx

OP posts:
Original poster
Hopeandfaith1990 · 14/08/2025 12:29

@Jecca88 Meds are okay, its 3 estrogen tablets a day, 1 injection of Lubion (progesterone) that I'm finding quite sting-y! And then of course the hydroxy, Pred & omeprazole and the Cyclogest pessaries, aspirin and all the supplements. Okay it sounds a lot typed out!

Your numbers sound great, I had different speeds of growth too. The Drs told me they kind of have to decide if they would rather keep pushing the slow growers and therefore potentially sacrifice some of the bigger ones, or have collection sooner and get the bigger ones but the smaller ones might not be mature. Its such a numbers game tbh and there is nothing you can do. I knew I went into collection with 20 follices but I genuinely had no idea how many to expect from the collection, its such a mindfuck and its really hard. The bloating was SO bad for me in the close run up to retrieval, and way worse than I'd expected. I was living in floaty dresses, couldn't bear any pressure on my stomach at all.

Peppermint tea was a lifesaver. A holiday sounds like such a good idea, I went to Spain between my retrieval and this FET and it was amazing. I was still injecting for my FET but it wasn't a huge deal.

OP posts:
TammyinCork · 14/08/2025 09:53

SWMum9 · 14/08/2025 09:48

Thank you. Is that the full name of the group, there are two. I’ll join now and ask. Xx

Show quote history

UK Reproductive Immunology Support | Facebook

Deerdancer34 · 14/08/2025 09:49

@SWMum9 I am so sorry to hear this, have they not explained any possible reasons for this? I feel they should be letting you know what it means etc, if it's happened to others. Sorry I can't offer any advice. Can you ask them again about it and why you are getting negative OPKs?

@Jecca88 A holiday is always a good idea, it's so much you are going through both emotionally and physically. I still hate that it's largely the women that have to go through so much and you can't share the load with your other half! Your numbers are sounding great 💖

@TammyinCork No harm in getting a 2nd opinion and would be interesting to compare. Its so hard all this because I think there's a certain amount of experimentation still.

SWMum9 · 14/08/2025 09:48

TammyinCork · 14/08/2025 09:38

Hi there, I am so sorry to hear this. I've heard a number of women talk about similar experiences in the Reproductive Immunology group on Facebook.

I had my Zoom results meeting with Dr Shehata yesterday, and he has also put me on 20mg of pred from ovulation (I don't have high NK cells but do have high thyroid peroxidase antibodies, and have had six losses). I also need to take thyroxine. I am quite worried that this is introducing too many drugs too early, and want to ask another RI for a second opinion.

Show quote history

Thank you. Is that the full name of the group, there are two. I’ll join now and ask. Xx

TammyinCork · 14/08/2025 09:38

SWMum9 · 13/08/2025 21:54

Hi everyone, I hope you’re keeping well!

I’ve had my third month of negative digital OPKs and mid cycle brown spotting when I should be ovulating.

This all started when I started my protocol 😢 which is hydroxy daily and pred/progesterone from ovulation (which I now don’t know when it is)

I see dr shehata in his nhs clinic and their only response is to keep trying until next month which will be 5 months on the protocol. I’m feeling very deflated with it all.

Did anyone else experience these changes on the protocol? The bleeding is so triggering from the MC, feels like my body is failing me

Hi there, I am so sorry to hear this. I've heard a number of women talk about similar experiences in the Reproductive Immunology group on Facebook.

I had my Zoom results meeting with Dr Shehata yesterday, and he has also put me on 20mg of pred from ovulation (I don't have high NK cells but do have high thyroid peroxidase antibodies, and have had six losses). I also need to take thyroxine. I am quite worried that this is introducing too many drugs too early, and want to ask another RI for a second opinion.

SWMum9 · 13/08/2025 21:54

Hi everyone, I hope you’re keeping well!

I’ve had my third month of negative digital OPKs and mid cycle brown spotting when I should be ovulating.

This all started when I started my protocol 😢 which is hydroxy daily and pred/progesterone from ovulation (which I now don’t know when it is)

I see dr shehata in his nhs clinic and their only response is to keep trying until next month which will be 5 months on the protocol. I’m feeling very deflated with it all.

Did anyone else experience these changes on the protocol? The bleeding is so triggering from the MC, feels like my body is failing me

Jecca88 · 13/08/2025 12:38

@Hopeandfaith1990 - we do it the other way round, i prep the meds and he injects them and so far so good. I started the anti ovulation meds last night, needle is a little thicker and was sore for about an hour after.

How are the meds for prepping for transfer? Had another scan today, 20 follicles still there, 2 are a bit slower atm, but 18 looking good which i keep getting told is very good considering my AMH. I am feeling so bloated and tired and honestly crying a lot every day. I think i might book a holiday for september for a reset :)

Thanks @Deerdancer34 sending lots of love :)

Deerdancer34 · 12/08/2025 19:56

@Jecca88 Not overly sensitive at all. I avoided all friends with babies and even some friends and family just because they didn't understand what was going on. They did not get it at all and they try to say nice things but it's not helpful or wanted. That's why I found this forum so helpful because you can only understand it if you've experienced it. Much love 💕

Original poster
Hopeandfaith1990 · 12/08/2025 18:49

@Jecca88 my husband mixes/preps all the injections and then I do them myself. I wanted him to be involved but I knew I’d have to do them myself (control freak). I had egg retrieval done on CD14 after 13 days of stims injections (I did Cetrotide to suppress and Fostimon to stim). I don’t think I was ever at risk of OHSS but I certainly felt veeeery bloated and uncomfortable by the time I got to retrieval.

I’ve had two periods since retrieval, the withdrawal bleed came 11 days after retrieval which i think is just counted as a period then I had another one in the cycle after that which was delayed because of the Buserelin which I’d started injecting. I don’t think normally I would have had to wait for the second period to start preparing for transfer, but I did have to because our PGT-A results weren’t back in time.

yes doing a medicated cycle, I just didn’t want to leave anything up to chance if I could help it and still wanted the meds to be responsible not me. With a natural cycle you have to temp and do LH tests etc and I also think I just wanted to throw everything possible at it.

Yeah I reckon October sounds realistic - you’re doing PGT too right? Like me, if yours comes back sooner you might be able to do it earlier but I think having October in mind as a realistic date is fairly accurate 🥰 also, a natural FET is a shorter process than medicated if you wanted to go down that route? Xxx

OP posts:
Jecca88 · 12/08/2025 12:38

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.

Original poster
Hopeandfaith1990 · 12/08/2025 11:41

Jecca88 · 11/08/2025 12:26

@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.

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

OP posts:
Deerdancer34 · 12/08/2025 10:37

@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 💗

TammyinCork · 11/08/2025 15:09

Jecca88 · 11/08/2025 12:26

@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 · 11/08/2025 12:26

@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.

Original poster
Hopeandfaith1990 · 10/08/2025 18:24

TammyinCork · 10/08/2025 15:04

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?

Show quote history

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

OP posts:
TammyinCork · 10/08/2025 15:04

Hopeandfaith1990 · 09/08/2025 11:14

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

Show quote history

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?

Morgan236 · 10/08/2025 06:59

@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

lozzmax · 09/08/2025 23:52

@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