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

Hey loves,

How are you getting on @Hopeandfaith1990 - do you have anymore blood tests booked? is your first scan booked in? Love these affirmations. Need to remember you are doing everything you can.

@Deerdancer34 you're sooo sweet, sending big hugs. How is your tww? or 10 days?

Thanks @TammyinCork - for my IVF - i too had Fragmin added, i think its to help aid implantation. But when I got pregnant accidently they removed the fragmin from my plan.

Totally get why you have protected yourself again Dr Shahata @Gems2811 - he is rather abrupt, i love Dr Edge, i feel so safe with her and like she really cares and listens and has so much time. I wonder if you would request a consultation with her?

Had food poisioning this week - only lasted less than 24 hours, but wow was that scary and really hoping the baby is ok. As i edge towards the 12 week scan, my anxiety is really building. I almost can't bare an actual ultrasound, as both times i have got to the 12 week point, we have had the tummy ultrasound, rather than the transvaginal scan and when we have found we have lost the baby. I know there is nothing i can do to control, but also what if it was the food poisoning that has effected him. Just want someone to put me in a coma for the next 6 months.

@Jecca88 I think I’ve gone a bit OTT re tests - doing thyroid next week and iron/Vit D etc.

first scan is booked for 11th Sept, I’ll be just over 7 weeks (all going well) . Can’t even think about it at the moment, just makes me feel sick. I literally said the exact same to my husband yesterday - I said I wish someone could put me into a coma until 24 weeks lol.

Please don’t panic about your food poisoning my love, it won’t have affected him and in a way it’s just good your body was getting rid of whatever was bad. It must have been so stressful and scary though, not what you need.

i advise conversing with Chat GPT. They are my main supporter atm and I talk to them most days for reassurance and ideas of how to chill the fuck out. 😂

sending love to all and hope everyone’s okay.xx

Thank you so much, and yes, it was someone who was a mentor to me in my working life.

I think the pred is to keep thyroid antibodies down as any future pregnancy progresses, but I really don't think there is a point to the intralipids at all, and as I am allergic to peanut and intolerant to soya, I won't be going there (I had told Dr Edge this, but she said it was safe due to the difference between protein and fats - still too big a risk if injected into one's veins, I think).

Thanks so much for the advice from your Greek clinic - yes, CRP seemed totally fine with me going abroad (and because of the waiting lists here in Ireland, I didn't have much choice!).

@Jecca88 Honestly don't worry about the food poisoning, which I know is impossible with the way our brains work! When is your next scan? All I can say is keep taking it day by day and take strength from that lovely 10 week scan you had 💖

@Hopeandfaith1990 Keep going!

Hope you're ok @TammyinCork and @Gems2811

I've been finding the pred really hard the last couple of days, hate the way it makes me feel, all jittery and then the wondering will it be positive, will it be negative - its like a merry-go-round in my head. Anyway I got a negative this morning 😭 I find it so triggering still...Was hoping for some Christmas magic!

@Jecca88: Interesting that they removed the Fragmin upon your natural pregnancy... It's baffling how all of this works sometimes. Hope you are making a good recovery from the food poisoning - that sounds like such a pain.

@Deerdancer34: Sending you positive vibes... Pred is hard work and I'm glad I didn't take it at all on the third cycle of trying. I have also been reducing thyroid antibodies naturally with aloe vera juice, which seems to have worked!

@Deerdancer34 I am praying for some Christmas magic for you! And if the timing is out then I’m praying for a New Year’s Eve miracle 🤞🏻😀✨

Totally agree re the Pred - the jitters, tight chest, insomnia, it’s so tough. Coupled with negative tests and it all just feels so difficult. sending love.

@TammyinCork very interesting about the aloe Vera! Where did you hear about that? I’m getting my thyroid checked on Tuesday.

@Gems2811@TammyinCork I feel like some doctors kind of throw in alllll the meds with IVF even if you don’t have a condition for them (as long as it’s not harmful) eg I’m on blood thinners for this IVF cycle but I don’t have a blood clotting condition, quite a few IVF Doctors prescribe Pred too without having NK cells being raised (or so I’ve heard anecdotally lol). Almost like throwing everything at it and hoping something sticks. Fragmin injections are by far the most painful of the all the ones I’ve done and my stomach is so bruised. Obviously all worth it to support this pregnancy but they aren’t fun. The other morning I was getting ready for work and I saw blood on my dressing gown and my heart literally stopped (thought I was bleeding/MCing) but I was bleeding from an injection site in my stomach 🫠

@TammyinCork That's interesting about Aloe, might look into that 🧐

@Hopeandfaith1990 Thank you my dear!
Omg I feel for you seeing the blood, your heart must have stopped 😵‍💫 It's all so relaxing all this isn't it 😅

Period started...onwards and upwards to cycle 4 😵‍💫💪 Lots of love everyone 💞

hey ladies, I can't believe it - had our 12 week scan yesterday and everything looks good, he is still alive and wigglying about and nothing abnormal seen. Measuring slightly ahead at 13 weeks today. Finally registered with hospital and all the scans and widwife appointments are being scheduled. I am an increased risk of pre-clampsyia - so had to up my dose of aspirin to 150mg per day. Just means more monitoring. The Dr was very reassuring and told me to smile and just enjoy this good news.
Still in disbelief - this is the furthest we have got and maybe i can start to have some hope.

Sorry to hear that @Deerdancer34 how are you feeling?

How are you holding up @Hopeandfaith1990 - are you still practising your affirmations?

Sending love to everyone xx

Oh such such brilliant news @Jecca88 !!

Lovely news @Jecca88 how exciting. Can't believe you're in the second trimester, so happy for you. How are you feeling? Did you talk to the Drs about weaning off meds etc?

I'm okay thanks, have had a couple of dark days tbh. The lack of sleep is hard and when I'm awake at 3am I seem to recurrently imagine the sonographers telling us there's no heartbeat in a hypothetical scan. Then I beat myself for thinking negatively and tell myself I'm condemning myself lol. Its not very nice. I know realistically its just my brain trying to protect my heart because that experience is all I've ever known. I want to be positive soooo much but I am finding it hard. I keep telling myself "you can have a different outcome".

I am affirming the shit out of my affirmations tbh. Doing them lots and some journalling. Considered getting signed off school until the end of term again but equally I know I'd then just be sitting at home thinking about it? Again, I just want to be put into a coma xxxx

*beat myself up (can’t edit) not literally 😂😂

omg @Hopeandfaith1990 i didn't even realise but yes made it to the 2nd trimester. I am still feeling incredible anxious and tbh i am not really enjoying life atm, just getting through each day is an achievement. Don't get me wrong i am so grateful, but just so much trauma there. I really envy people who enjoy pregnancy. I start weaning off the pred next week and stay on progesterone till 16 weeks. I stay on Hydroxy for the whole 40 weeks. I do wonder if that will help me sleep better - currently waking up at 5ish everyday. The steroid's help with tiredness in the day but by 9pm i am sleeping on the sofa.

I am so sorry you're having the dark days too. I am totally with you on that - i constantly ruminate about scan outcomes, i hate how it is literally within the first 10 seconds - your whole future can change. I really don't know what to suggest to get through it, but two things can be true at the same time. You can protect yourself but also have some hope that this is a different pregnancy. I also imagine scenarios like if we lose the baby - this is what our month will look like and make sure to plan in some treats for myself and husband. It's so hard. The relief after a scan lasts about a day and then worry kicks in.

its totally up to you to decide what to do about work. would they let you reduce hours to manage at all? Have you told them? I find work is a great distraction for me.

@Jecca88 Ohhhhh how lovely and super exciting! I know the anxiety will be real still but I hope you manage to relax a little and start to enjoy your pregnancy 💞 I found when I was properly discharged from CRP that I actually could enjoy the pregnancy and believe it was real, you still have times where you wonder because you obviously don't have as many scans but then you will start to feel baby so that keeps you reassured too. Like you though I still have that wish that I could be excited at a test, excited for the scans etc etc. But anyway it will all be worth it and we're here every step of the way!

@Hopeandfaith1990 It's a long old wait isn't it but just keep pushing down the negative thoughts with your positive thoughts! It is soooo hard! Maybe put a podcast on or positive affirmations when you're awake at 3am, it was the only way I could redirect my mind, feel like I was resting and sometimes drift off.... Like @Jecca88 said, completely up to you but I think actually going to work although horrid is a good way to keep busy (I used to hate dragging myself out to teach!!). Use Christmas as a distraction! But if it is too much, do look at reducing or being signed off, you don't want to feel like you're swamped, just not worth it 💞

I'm alright, I had a few down days of feeling its all unfair that I have to go through this whole rigmarole but I've shut it down and looking 'optimistically' to the next cycle... plus I know I'm so fortunate to have my daughter. Its hard isn't it - disappointment it was a negative, relief I didn't have a miscarriage, the thoughts of how many cycles can we do financially...the things we go through 😵‍💫

But here we go, sending positivity to everyone, we can do this 💖

Thank you @Deerdancer34 that is really reassuring, I can't even imagine being able to feel them move. Will that bring a whole other anxiety? - maybe i will move into the hospital pre-natal unit. I have another scan tomorrow already at the hospital and first midwife appointment next week. Feel slightly less nervous about tomorrow but still have to go in with trepidation.

Bless you - its totally acceptable to feel down even despite having your daughter - two things can be true at the same time. Plus it is sooo much harder for us ladies. Are you doing super-overlation? how many cycles do you think you will try?

keep affirming @Hopeandfaith1990 - we are all here with you.

Hi Ladies! Hope im okay to join. Have just spent the last hour reading as much as I can of this thread and getting an idea of where some of you are at in your ttc journey.
Have recently had my first appointment at CRP. Been trying to concieve my 2nd for just over a year now. My little boy has just turned 2 and was concieved first time. We had 2 chemicals at the beginning of the year but unable to concieve for 9 months now. I have my follow up appointment next week, however I did ask for my NK results to be sent. Everything is normal apart from Total NK absolute count is slightly high at 207. And activation marker was borderline. I'm scared for all the meds Dr S will want me on. But mostly I just don't know if I'll be doing the right thing? I'm 38 and for me I thought the 2 chemicals were mostly to do with my age. My main concern is the fact I am struggling to fall pregnant. I don't want to spend thousands of pounds when it might be that we need IVF? Anyone had a similar situation. We are also waiting for DNA fragmentation results.

Hi all, little positive (mostly!!!) update from me. We had a scan at 6w4d today and saw a heartbeat. We are measuring correctly for our dates (which is obviously ultra specific due to it being a FET) and everything was looking good. We went for the scan because yesterday afternoon I had some brown discharge and spotting so obviously thought the worst. This is the most positive scan we've had and we've not ever seen a heartbeat before this so it feels very special. Obviously we're by no means out of the woods but today is a good day. Doctors said they want me to focus on anxiety management/mental health and that the brown discharge isn't something to worry about.

@Deerdancer34 I do mostly think you're right about work, it is a distraction but I just don't want to keep soldiering on then regret it if that makes sense. I've spoken with HR today to see if I can find a middle ground. Its only one week to get through before the Christmas holidays start so that feels good. I agree with @Jecca88 my love - having a daughter doesn't mean you can't or shouldn't feel how utterly The Pits this method of conceptions/experience is.

@Jecca88 I resonate so much with being so grateful but so much existing trauma there. I really hope you get some sleep, its just another thing piling on isn't it. I've been taking the Pred at 5am to try and mitigate it making me feel shitty all night, I think its helping slightly. But I am still awake 3+ times a night reading my kindle. Its a funny old existence haha. Hope your scan went okay today - I am going back for another next Friday.

@ChaE05 Sorry to see you here, but welcome. Sorry you've had a tough journey, this is a safe space xx

I think with low-ish NK cells, Dr S wouldn't put you on the max meds - perhaps he will suggest superovulation as a way of conceiving? I'm not exactly the same as you but I've had 5 losses and then struggled TTC for one year. I did a round of IVF and the second frozen transfer worked and I'm now 6.5 weeks along. Are you already on progesterone? I think that would most likely (and aspirin) be your first medication after your chemicals? I also did DNA fragmentation, it came back normal so we didn't do ICSI (which seems to be the main way of treating DNA Frag) xxx

This is brilliant @Hopeandfaith1990 congratulations on hearing the heartbeat, a special day indeed 🩷

@Jecca88 hope your scan went well, I think of you all with your scans even if I’m not on here much

@ChaE05 sorry you’re in this spot too. I am/was in a similar situation to you although my total count was a bit higher, 238 I think it is but I had three early losses and then had my daughter with no immune protocol, I was being seen by Dr Gavin Sacks in Sydney (I lived there then) who specialises in the the Bondi protocol which is essentially for NK cells about those losses, and he didn’t think my levels were high enough to treat with anything other than progesterone and aspirin. Fast forward to this time last year and Dr S felt my losses were due to my NK cells and I did Superovulation and the full immune protocol for 6 months and never got a positive test. I found out on month 6 that I have severe endometriosis and after having that operated on, I fell pregnant on the following cycle. I did lose that baby and I’m waiting on test results but I was Dr S protocol, just no intralipids. So now I don’t know whether my NK cells were to blame or not, I’ll still continue with Dr S meds for my upcoming FET because I probably have a few things going on but I think what I’m saying is that personally I wish I had continued to consider that other things were at play when my levels are lowish even if I did it all again. Like microbiome for example. I was totally blinkered to it just being my NK cells and wish I’d done all my treatment with Dr S after the op when I was a year younger x

@Gems2811i am so sorry for your struggles and your loss 🤍 it's such a heartbreaking journey. It's so difficult just to find out the answers as to why!
I think this is my concern right now... I'm wondering if the NK cells are the real issue, but this is the path we have chosen. I also think I'm going to get my microbiome tested.
Did Dr S suggestion the super ovulation? And what were you exactly put on by him. I'm unsure how many cycles we would give ourselves before looking into IVF. We obviously need to be mindful of finances as none of this is cheap hey.

How did you find out about the endo? That's also in the back of my mind... I don't have any symptoms other than infertility! But also know it's very common to not have any symptoms and have it! Wishing you all the best for your upcoming FET xx

@Hopeandfaith1990a huge congratulations to you! You must be over the moon. Will keep everything crossed for you. I see your scan was a very positive one 🥰
Thank you for replying... it's all such a long to take on. I am wondering if he would suggest superovulation. I hope so as I think I need a boost at trying to fall pregnant. Sorry, did you just go straight to IVF or have you had treatment for NK cells?
I don't want to try too many cycles with Dr S before I consider IVF as I will be 39 in May so i don't really have the time to wait xx

@Jecca88 Really hoping today is a lovely scan for you 🙏 I personally loved it when I could feel the baby move because that to me meant she was ok because I didn't have the scans to check up anymore but everyone is different! I think they let you do 6 rounds of Superovulation so I've heard, so I will probably do that but I'm not really thinking about it because I'm hoping I won't have to come to that decision! Bury my head in the sand 😅 Ah and thank you to you and @Hopeandfaith1990 because I sometimes feel guilty already having a daughter but as you said @Hopeandfaith1990 it is a rubbish method of conception 😅 Drugs, anxiety and uncertainty....a lovely cocktail! 🤣

@Hopeandfaith1990 Many many congratulations!!! There is just nothing like seeing that heartbeat, I am so utterly delighted for you! I know it's still very early but you reached a new milestone and that feels good. Bring up that feeling every time you feel worried 💖

@ChaE05 Welcome, so sorry you are here but its amazingly supportive and was the only thing that helped me through after my losses. I think you may not need as many meds and I would also suggest trying Superovulation before IVF - that boosts your chances of conception but see what Dr S says?

Much love all 💖

I have Dr S NHS protocol - I don’t see him privately, so I get the Prednisolone, hydroxychloroquine, progesterone protocol via recurrent miscarriage but I did my IVF privately so I also take Fragmin and lubion injections. My NK cell levels were moderately high in most of the categories.

have you had your AMH done recently ? It might determine whether you feel you need to fast track ivf or not xx

@Hopeandfaith1990right I see. Woahhh so many different medications, but all worth it now you are pregnant. I had my AMH tested about 5 months ago and it was 9.7 xx

Mine is 25mg Pred, 200mg hydro, 400mg progesterone, 75mg aspirin (I think that’s right..) I did Superovulation, I just moved to IVF because we’d set the target of 6 months of trying that with Dr S and then they linked me up with Dr Jain who has a satellite clinic with them. My IVF is actually now in Greece because I couldn’t afford to do PGTA in the UK after all of this testing and treatment lol. I realised I had endo because I was just about to order my IVF meds with Dr Jain and I ended up in A&E with what I thought was an ectopic or something. A test called Endosure gave me a high probability of having it and then I went to see a specialist who confirmed and operated. Sorry that is a long and boring story! I’m still doing the whole immune protocol for my NK cells alongside the IVF plus a blood thinning injection

I’m going to add back in intralipids for my FET because that’s the only thing I dropped from the DR S protocol and it plays on my mind that that might have made a difference to my loss

Do you know if you have male factor? The Superovulation is pretty cool cos you’re producing more eggs each round x

@Gems2811did you do 6 months of superovulation? Did all these meds given you any horrible side effects?

Im not suprised you have gone abroad for it, it must be significantly cheaper? It makes me made how much these clinics charge... they just play on the desperation we have for wanting a baby.

My partners morphology dropped from 4% to 2% in the last 4 months but his sperm count was really high and motility excellent so Dr S wasn't concerned about it. However we are just waiting on the results of the DNA frag.
Have got follow up appointment this Tuesday and I will be day 3 of my cycle then. I also don't think the DNA frag results will be back then. So I'm assuming anything we will start will be the following cycle. Feel very apprehensive for my appointment as I feel quite overwhelmed with it all and worried about taking all this medication x

@ChaE05 Do ask if any questions about Superovulation, I did it the first time and managed to conceive my daughter and now doing it again, in hope of No2. You take letrozole Day 2-6 (no side effects), you then have a scan to see how many follicles and when to trigger ovulation (the aim is to produce 2-3 follicles rather than 1, thus boosting your chances of conception). You then take the meds for only 10days, unless you are pregnant and then you continue. The only meds that many find hard work are the steroids but its only for a short time if negative and if you are pregnant, you just deal with it and you don't really care because you're pregnant 😅 I'm on 300mg of Hydroxy, inofolic x2, vitamin D, COQ10 200mg x3, pregnacare max & aspirin all the time and then for 10 days 25mg Prednisolone & 400mg Utrogestan and intralipid infusion. Your medication dosage might not be so high as you have lower NK than me!
It's a lot of info and very overwhelming, tbh I had no idea what Dr S was going on about & I still don't know if I really understand it all...I was so desperate and just pleased to have a plan after the NHS reply of just 'keep trying'. Do ask, there's so much to take in!