Immune/NK cells pred thread #32

[VenusStarr]

Hi everyone. The last thread is filling up. Have tried to tag everyone who posted on the last few pages, but feel free to join / tag anyone I missed.

@Gizmo1983
@fleur89
@Sunflower360
@MotherOfShihTzus
@lozzmax
@HopefulH
@kea1990
@Sprinkleofbabydust
@Newbeginnings22023
@star2022
@RumandSpinach
@Ems123456789
@MamaW05

Love to all ❤️

@HopefulH @lozzmax am I imagining things or are one of you at CRP tomorrow my appt is 9pm so pretty early wonder if we may cross over x

I am! Mine isn't until 10:30 though - if you're having intralipids we might cross over!!

Thinking of you for tomorrow @Gizmo1983 I hope you get some sleep tonight ❤️ hope the journey down was OK today.
That's rubbish about your car, gloves it is! 🙂
Hopefully you can catch up with @lozzmax tomorrow. I hope you get on well tomorrow @lozzmax did you say you're being discharged? 🙏

@Carportforme ❤️❤️

My stomach is in tatters, the one I caught this morning has gone into a big, dark bruise. Lovely. Had a nice autumnal walk today with dh. He's coming with me tomorrow morning for the scan, nice to not go alone. He's usually always working.

Goodnight everyone 💕 xx

Thanks guys. I’ll have a blue pac man bag with me x

Hope things are OK @Gizmo1983 ❤️

Had my scan. All looking OK. Lining 6.3mm and got 6 follicles 10mm - 13mm and some smaller ones. Back on Wednesday x

@Gizmo1983 I'll look out for you; I'm just arriving shortly. I'm wearing all black with glasses.

@VenusStarr yes hopefully being discharged today if all is ok 🤞🏼🤞🏼🤞🏼🤞🏼

@Gizmo1983 I had my booking in appointment on Friday, was there for quite a while, you have all your notes online now, not in a folder anymore. I explained the anxiety that I have from time to time and she said its understandable, she did say that there is the perinatal mental health team and if I felt like, a referral could be made, I said I'd see how things go.
Still feeling sicky, haven't been properly sick but gaggy, feeling hungry a lot, certain foods i want, but then don't want to eat them, feeling tired all the time too.
How are you lovely? Hope today goes well ❤️

Hi lovely ladies.
@Rainbowsunshine81 thats pretty much how I am a bit gaggy have never actually been sick hang in there, good to know they will refer you if you want.
@VenusStarr oooooh that’s a good number if follicles just keep doing what you’re doing. When are I back for anothEr scan?xxx
@lozzmax so lovely to meet you it’s made my day ☺️.
update all looks good so far. We still have a heartbeat she saw a small haematoma so we now know why i was bleeding but it is only small and she isn’t too worried. Had my lipids and in my way home phew xxx

That's great news @Gizmo1983 🙌❤️ I'm so pleased all is well. Are you off blood thinners at the moment with your sch?
Pleased you and @lozzmax got to meet up today too 😊 hope you're all good too @lozzmax

Yes, I'm pleasantly surprised it's looking OK so far. I felt anxious today, despite saying what will be will be 🫠 I'm back on Wednesday morning. Down at crp on Thursday lunchtime for my pre-transfer intralipids. Xx

@VenusStarr glad everything looking good for you on the follicle front. When is the collection and transfer?

@Gizmo1983 so lovely to meet you too! And I'm glad your scan went well today ❤️❤️ one more milestone crossed off.

We saw baby girl today, she's all good in there. I did think I'd be discharged but Ms. Edge wants to see me in 7 weeks, not sure why. But any extra appointments I will take!!

@Carportforme I'm so sorry for everything you're going through. I hit a very bad place mentally this year as well. I got some therapy and took some time off work, and tried to focus on the things I had to be happy about. It definitely helped but even though I am now 20 weeks pregnant, the recurrent losses and everything they have entailed has taken a piece of me that I don't know whether I'll ever get back. I hope you manage to find a route to a healthy pregnancy, it's all so bloody unfair and I'm so sorry for your losses ❤️

Thank you. Just coming up to the anniversary of my MMC last year. I didnt think I would be bleeding from a third loss, it does take a chunk of your soul I think.

@Carportforme I hear you, I had four consecutives this year. If it makes any difference at all, mine were all different losses and this pregnancy was actually conceived with no medication because we weren't trying that cycle and I didn't think I could get pregnant (I know- idiot). I started it as soon as I found out, but sometimes I do wonder whether it would have worked out without all the meds. There's a lady on tiktok called Sammy Mac who had four in a row and is now pregnant in her second trimester - there is always hope in the dark times ❤️❤️

@Carportforme hey sweet I’ve been thinking of you. How are you doing. Mr shehata does have an nhs clinic in Epsom that does everything but the intralipids I’m not sure sure if you can just be referred but maybe an option. No matter what the results of the tests everyone seems to end up on steroids, progesterone and some hydroxychloroquine and intralipids. The ladies here may correct me if I’m wrong about that but it seems the general list of meds. My ivf clinic would do them all except the hydroxy and intralipids my ivf dr was horrified when I mentioned them lol. I echo what @lozzmax says in that we will never know how much the meds are doing and what nature decides, I have a friend who has had 4 miscarriages then the 5th stuck and all was well. My neighbor tried for 20 years ivf normal the lot then had a baby naturally at 42. I too associate with the dark times which reminds me I need to find what time my counselling starts tomorrow 😬😬😬. Now it’s close I don’t want to do it.
@lozzmax I really like Dr Edge, one of my appt I’m due to be there she was away and it was some one else so I changed dates to stick with her.
@VenusStarr do you have an estimated date for collection yet it must be getting close?
wow I must say that journey even with a hotel stay half killed me I have bad hips anyway and think the hormones make your muscles more lax I was in agony. Poor hubby as there were also a million toilet stops 🤦‍♀️🤦‍♀️🤦‍♀️. Hubby was chatting with dr Edge she said she’d discussed a more mid country clinic with Mr Shehata but it’s finding the right staff to run it that’s the problem.
I was quite relieved they found a little SCH they’ve stopped my aspirin but I’m to continue the fragmin unless the bleeding starts again then I have to stop
and ring them. I have my appointment about my stitch on Tuesday so a week till another scan so that’s my next goal to get to.
love to everyone ❤️❤️❤️

Yes I was going to say, you could try getting a sympathetic doctor to prescribe prednisolone and progesterone and maybe even hydroxychloroquine - that's very likely what Dr. S would put you on anyway. The expensive bits are the first load of tests, and then the intralipids. When you combine intralipids with scans, an appointment and some medication, it tends to cost around £700-800 a visit once you're pregnant. You'd need to budget for around 6 lots of intralipids and then scans and appointments at 6, 8, 10, 12, 16 and 20 weeks. If they do bloods as well; you're in for over £1k. Our bank balance is quite relieved to have had my last physical visit there!!

Hi @Gizmo1983 my ivf clinic do steroids and clexane. My Dr was horrified by intralipids too! But he's turned a blind eye to it and said he knows I'll be doing extras. I've gone off piste this time and doing a combo of my ivf clinic and Dr S - I'm already on 10mg of pred since cd2 stims and 20mg clexane (I hate fragmin). But I'll go up to 25mg pred and 40mg clexane at collection. And I'm doing lubion and cyclogest as well after.
See how you get on with the counsellor, hopefully just having that space will help you.

I'm hoping for egg collection over the weekend. Been quite twingey today on the left. Went for a good walk earlier, had loads of water and protein today too. Going for another walk after work too. The nurse did say she didn't think I'd be ready by then but I've never had a collection later than cd13 and I lost my top follicle twice that way. I'm keen to trigger at 18mm 🙏 dh is really going to struggle with work if it's Monday 🫠 but with one at 13mm already on cd7, I think my prediction is right. We'll see.

How are you doing @HopefulH @Jecca88 @lozzmax @Rainbowsunshine81

Anniversaries are really difficult, especially when university had another loss ❤️ @Carportforme sending love xx

hey @VenusStarr sounds like you’re on the right track. Keeping everything crossed for you. IVF is a minefield for me and haven’t even ever considered it - but coming round to the idea - atleast to maybe have some safety embryos. Got a negative test yesterday 10DPO and period has arrived today so feeling really glum. Also had a few pregnancy announcements which just stabs. Onto the next round - but for now just want to hide away from everyone.
I really love the idea of @lozzmax and @Gizmo1983 meeting at the clinic. Please tell me you used your usernames in the waiting room 🤓

Yeo, you just never know do you. I’d love to have a camera in there ti see what is happening or not, as the case may be.

Ah, bless you and thank you for your thoughts. I am going to try and get an appointment with Dr Thum at the Lister. He seems very into the immunology thing too but I dont think it’s his soul dedication like Dr S seems to be. Since I have several allergies I am thinking that this may be related so there are a couple of things I hope he will check and then look at my NK cells if he thinks they’ might be the issue. But more central for me than Epsom.

@VenusStarr sorry I've been a bit AWOL. Sounds like this round is going well and good that you are combining protocols. I have everything crossed for you that egg collection goes smoothly!

I'm 20weeks along now so weaning off the prednisolone. Struggling a bit as I have been feeling really low, which I think might be the change in dose. I've been accepted into perinatal mental healthy care so hoping they can help me a bit. I have a lot of invasive thoughts all the time - the mental strain of pregnancy after loss is tough! I'm also finding I can't concentrate on anything else so I'm a bit useless at work. But - I know I shouldn't complain. I have my anatomy scan this Friday so just gearing up for that and praying everything is okay. Maybe I'll feel a bit better then.

Sending love to all xx

@Gizmo1983 been trying to eat bits through the day which helps a bit. I think I might ask for the extra appointments.
Fab news about your scan ❤️ hope you are doing OK. Xxx

Hi all

Hope you don't mind me joining - had my follow up with Dr S today to go through my results. High NK cells which go mad in a pregnancy state, my NK cell activity is borderline high. I have a 2 year old, but 4 miscarriages in 14 months after him.

Dr S has put me on his complex protocol - I'm v nervous about Pred!

Do people just pay for the medicines with their Dr or try and get them elsewhere? I was so overwhelmed i just got a 3 month supply with them and will need to do some research as it all adds up!

Anyway - I hope everyone is staying sane and trying to keep well. Look forward to hearing all of your journeys and hoping we all come out of this with the best outcome.

Hi everyone. Had my scan this morning. Pleasantly surprised that it's looking pretty good. I have 5 between 14 and 15mm. I'm a bit bummed about my lining though as it was about 6.8mm but no real defined triple layer yet. Which is worrying me for a fresh transfer. I decided to not do acupuncture this time as I've spent so much already and juggling work and appointments is hard enough. She didn't seem too worried but I am.
I had bloods and if they call me later, I'll have to go in tomorrow for another scan before I go to crp. But if not, I'm back Friday and think that'll be the last scan. I'm sitting working with my feet in a vibrating foot warmer!! Going for a walk later too and bought some beetroot 🫠🫠 any other tips gratefully recieved 🙏 I've attached my chart (hopefully cropped!) X

Hi @meetmeatmidnight1988 welcome ❤️ I'm sorry you found yourself here but also glad you did! I hope seeing Dr S and getting some answers and a protocol help you.

I get my GP to do my 3 month bloods and that saves lots but they won't prescribe anything. I know some people do get their meds which is good.

I find pred usually ok (but am not sleeping well at the moment on it). Take it as early as possible. But I get terrible moonface on it so look like a hamster! 🐹
Are you able to try straight away? X

Hey @VenusStarr are you taking a high dose of vitamin E I’m sure this helped mine. There are also clinics that use vaginal viagra ( probs bit late for this one ) but worth discussing with your clinic. Amazing news on the follicles one of my friends never got the 3 layers and her ivf worked xxx
I’ve always drank tons of pomegranate juice as well lol. As for accupuncture it never did anything for me I ended up hating it and didn’t do it this time and it worked so for me accupuncture is a no no. Just keep those feet warm/circulation going and hot food and drinks nothing cold in that tummy xxx
@meetmeatmidnight1988 welcome your story is similar to mine, same results and protocol had no issues with the meds just the scary prices.
hi @HopefulH wow you are doing amazing, I’m waiting for my maternity mental health referral as well had some private counselling but by the time had the questionnaires and formalities I was told to have something in my ears and hands and that’s as far as we got till next week 🤦‍♀️
@Carportforme have a look at London blood tests online and ivf matters in London they were mentioned on a fb group they do nk testing I know nothing about it but thought it worth a mention.
@Rainbowsunshine81 defo worth trying for those extra appointments. I have my appt to give me the date for my stitch on Tuesday so the last 4 weeks I’ve had a scan a week terrifying and not good for my nerves but I’m finding a weekly goal quite helpful.
woke up this morning with an achey bump have gone from a washboard stomach to a pot belly so hoping it’s just stretching it’s down the sides groin area so praying that’s all it is xxx
love to all xxx

@Gizmo1983 i will do and thank you for the tip 😀