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 ❤️

@Thornters good idea on the words ones as I am the same with the bloody lines. Just did a clear blue in the toilet at work and it was negative no matter how long I look at it! So guessing I'm out this month. Will continue progesterone and test in a couple of days just in case. Have had some spotting this morning, weird. How many chemicals have you had? Feels like it keeps happening to me and I'm not sure whether that's normal or whether I need to do something differently.

Hydroxy is ok after a few days, your tummy settles down!

@lozzmax oh I'm sorry this has been so up and down for you. It's really confusing as to whether to continue to take the progesterone or not as 10DPO feels early for stopping when you could quite easily get a BFP on day 11 or 12. Good shout on testing again in the next couple of days. Would this be too early for your normal period do you think?

I've also had a bit of conflicting advice re the Prednisolone as Prof S said to start it the day of ovulation but Ms Edge said within 2 - 3 days of ovulation to ensure it doesn't disrupt ovulation completing. Anecdotally on other threads several people who had a successful pregnancy seem to have gone for 3DPO to start the Pred. My mind boggles!

I had one miscarriage (nearly 7 weeks) before my 17 month old and then I've had 6 chemicals if you include the one no one is sure about last week. They've been between 3 and a half weeks and 5 and a half weeks. I know what you mean about it feeling like it keeps happening. The 6 I've had have been over the last 10 months and it's exhausting. How long have you been on the CRP protocol for?

I asked Ms Silva Edge yesterday if there's anything else we should be doing as it seems to keep happening but she said no except for adding the hydroxy, which was optional at this stage so I guess we just carry on trying for now.

Thanks for the reassurance on the hydroxy!

I hope the spotting stops and you can go home early!

@Thornters yes last time I stopped the progesterone and then got a BFP 2-3 days later so I'm going to stick with it for now. I've now had 2 missed miscarriages and 3 chemicals (not including whatever is happening here) - 2 chems and 1 MM were after my daughter was born (she turned two last week). I was on the protocol when I fell pregnant with her and presumed it would be that simple again, but it's been a rollercoaster. I've had a separate IVF consultant tell me to do IVF with PGTA testing to prevent the disappointment of these chemical pregnancies, I think I might go for it now. I cannot keep going through the hope and disappointment and I'm concerned about my age (I'm 36 in August).

Have you considered IVF at all? x

@Thornters PS. I'm not on prednisolone, I'm taking the GCSF injections so I can't help there sorry!

@Thornters I'm currently 27 weeks pregnant on Dr S's complex plan and started taking prednisone and progesterone from confirmed ovulation as per bbt spike. I expect I was around 2dpo as my temperature typically rises over 2 days post ovulation rather than rapid onset. Hope this helps!

@lozzmax yeah I definitely see the sense in continuing with the progesterone until 12 DPO. I'm really sorry for your losses. If one more person says to me "well at least you can get pregnant" I think I'll cry. Getting pregnant multiple times but it not being successful doesn't make any of us feel better.

We haven't really considered IVF, mainly due to cost and age (I'm 39). At the moment we're eating in to our house deposit fund for the clinic costs and don't think we could stretch to IVF as well. I think the PGTA testing sounds like a really good idea and could offer some peace of mind.

@fleur89 congratulations! So exciting! This is really helpful - thank you. This seems to be in line with what most people are saying so I might hang fire when I see the solid smiley face and wait 48 hours before cracking on with the meds. I've never tracked BBT but maybe I should look at this too for a more accurate measure?

@Thornters thank you! Fingers crossed - this one seems to be a fighter so far!

I definitely recommend tracking bbt, I did so on the Premom app. I also recommend using easy@home cheapies for ovulation and pregnancy tests. You can upload images onto the Premom app which tells you when you will ovulate.

The solid smiley on CB ovulation tests doesn't tell you that you're currently ovulating or have ovulated, it tells you that you are about to ovulate within 24-72 hours. So if you start meds while still seeing a smiley it'd be too early and may interfere with ovulation.

I have been pregnant 5 times (1 live birth in 2022, 3 MMC in 2023 and this current pregnancy in 2024) and always fall pregnant first cycle trying following this method: DTD 2 days before ovulation (static smiley day 1), the day before ovulation (static smiley day 2), and the day of ovulation (smiley disappears). Then rest!! Outside of that we just do it when we feel like it / have time.

I find that my bbt starts rising the day after ovulation (so 2 days after my last static smiley) but not above the cover line. 2 days after ovulation it is above the cover line and this is when I started my meds (est. 2dpo). Around 6dpo I have another increase in bbt and I get a faint positive reading on easy@home (most sensitive pregnancy test I've found) at 8dpo.

My issue is high nk cells - according to Dr S triggered either by the birth of my daughter or a bad spell of Covid late-2022. Was on prednisone, intralipids, baby aspirin and progesterone to keep things going.

@fleur89 congratulations on your pregnancy, you must have been so relieved to get past the first trimester. Three MM sounds awful, I'm sorry for your losses - those terrible 'sorry there's no heartbeat' scans are just etched forever on your memory aren't they? Thanks for the tips on TTC, we definitely did it too much this cycle, I didn't want to take any chances.

@Thornters sorry for your losses too. The constant rollercoaster of positive tests followed by bleeding and negatives is so hard on the heart, especially when you're wanting to put on a brave face for your existing child. I'm just at my other clinic now getting a blood test for Thrombophilia as Dr. S won't do it, and they're going to do a HCG one too so hopefully I'll get some answers.

Sending lots of love to everyone x

Good luck for your test @lozzmax . Hope you get some answers xxx

@Thornters I’ve also had some interesting digestive side effects in the post-ovulation part of the protocol, which are the opposite of the constipation that others seem to cite with progesterone/steroids. Also had found the Adalimumab made me super nauseous so maybe I’m just particularly sensitive at the moment! I’m not on hydroxychloroquine though so not sure on that front.

@Thornters I’m also confused by the conflicting advice as I saw Ms Edge before starting phase 2 and asked whether I should start pred at ovulation or a couple of days later and she said 24 hours following peak LH test, and not to worry about waiting for BBT to confirm ovulation (usually 2-3 days later). So that is what I’ve done this time, but when I was on Cyclogest under a different doctor he said to wait a couple of days to ensure ovulation has happened and give it a chance to clear the tubes so as not to risk ectopic. I may go back to that approach next time if not successful this month 🤷‍♀️

Good luck for your tests @lozzmax - hope you get some answers!

@Thornters out of interest, has anyone looked at your progesterone levels? I'm wondering whether that's contributing to this multitude of chemical pregnancies? Dr. S wants to see me but no appointments until end of the month. I'm getting quite fed up with doing the same thing and continuing to get the same results

Hello all, sorry I've been awol. I'm looking to do ivf come Sept, after two years trying unsuccessfully after our last missed miscarriage - so I'm in the process of getting all my hormone tests done etc. (which includes the dreaded AMH test!) I've got to send all my nk results from Dr Shehata to the ivf clinic too and I was wondering if anyone else who is with Dr S might have the reference values he writes on your results? I lost my physical notes so they sent me them all again via email but it doesn't have the reference ranges on. I think he wrote them on and then highlighted what the results should be. Has anyone got this on their results and would you mind sharing with me please? 🙏

@HopefulH I can send them to you - which ones do you need? I'm a bit confused by what I'm looking at!!

@HopefulH is this what you're after...? Let me know if that's clear enough...

Also, don't let the AMH stress you out - I've been told by loads of doctors and sonographers that this isn't the be all and end all and that lots of women with low AMH have plenty of time to conceive. Keeping everything crossed for you.

@fleur89 you're an absolute dream - thank you so much for sharing that. I ordered the easyathome ovulation and pregnancy tests, which arrived this morning and have downloaded the Premom app. I've also ordered their thermometer to start tracking BBT.

Looking at your DTD schedule, I think we're pretty in line with what you do, although we might have missed a couple of my actual ovulation days thinking they were a day earlier with the static smily face. Of 9 times of trying we've gotten pregnant 7 so that part seems to be ok. I'm on the exact same meds you were on with the recent addition of hydroxy so this is giving me hope.

Funny you say that as Prof S thought my high NK cells could also have been triggered by the pregnancy with my son. I also had a nasty case of COVID after he was born but I wasn't asked about this.

@lozzmax how did your tests go yesterday? Thinking of you. I hear you on it feeling like groundhog day/week/month. I'm also bored of going round in circles and getting the same results each month. It's really sad but when I see a positive test now I feel like I'm already bracing myself for the worst.
No one has checked my progesterone levels I don't think (it's hard to keep up with what has and hasn't been tested for at this point!). I've had a Well Woman scan after each chemical to ensure there is no retained tissue or any polyps, cysts etc and each time the sonographer (I always make sure I see the same one at Ultrasound Direct as she's brilliant and has been on this entire journey with us since my first miscarriage) has confirmed that my endometrium is a really good thickness so I assumed that my progesterone was ok. I thought that if it was low then the endometrium would be thinner but I might be wrong here. Are you going to get yours checked?

@elarcoiris Yeah same for me - definitely the opposite of the constipation others have talked about. This month I'm definitely going to wait until after ovulation to start the Pred and Cyclogest and see if that makes any difference.

@Thornters thank you! That's perfect. Do you also have the range for this page (see attached)? I'm very worried my AMH will be off the chart low now and IVF won't be an option 🤞. I am still ovulating naturally but we just can't get pregnant anymore 😔

@Thornters Sorry, Also this page... I can't remember what all this means either!

@HopefulH no problem - here you go :) Fingers crossed AMH won't be too low (mine's pretty low at 5.2).

@HopefulH my AMH is 9.8 x

I've missed loads! @Gizmo1983 I'm really sorry to hear about your dose mix up. I hope it doesn't impact on your outcome. Do you have another scan today? I hope all goes well and you're feeling OK? I tend to find I get more tired as it gets closer to egg collection ❤️

@HopefulH good to hear from you, have to picked a clinic? Try not to worry about your amh too much. Mine was only 5 first time round and we got 3 good blasts. It's now 9.8 and I got none 😑 have you had a scan, your afc will be an indicator too.

@Rainbowsunshine81 how are you getting on?

@fleur89 hope you're doing well

@Thornters hope you're doing ok?

@lozzmax I'm sorry ❤️ sending lots of love

@star2022 hey, hope you're doing alright?

Sorry for the short messages. I need to go back and catch up on everyone's messages. My eye is on the mend, I think, but I've been left with a weird ulcer type thing in my eyelid. It's gross. I've got a hearing test later at an opticians so going to ask if they can recommend anything. Although I'm terrible with eye drops. Dh was away with work overnight and got back late yesterday, still don't think things are right 😓

Sending lots of love to everyone 💗 xx

@VenusStarr I'm doing OK, felt quite down the day before yesterday and slept for a couple of hours which helped. Been making a few things for my shop on etsy to take my mind off things, also wrote down a few more questions for my follow-up a week on Tues. I hope you're OK ❤️ lots of love. Xx

@Thornters thank you lovely! That's spot on what I needed.

@VenusStarr Nice to hear from you too. Sorry to hear your hubby is struggling. My husband had counselling a couple of years ago when he hit rock bottom and it actually really helped him. He was getting really angry and aggressive all the time (not at me) but it was really tough.

We have chosen to go with a consultant Lynne Chapman and we have our first appt in a couple of weeks, when I'll have my afc scan. We're having all our preliminary tests done at the moment. We got my husbands sperm results and dna frag results back yesterday and they weren't great 😔. He was so deflated as we've both been super healthy, no alcohol (apart from very very occasionally) for four years now! And he's been on supplements for pretty much all that time too. I think it upset him that our losses might be down to part him, where as I think before he thought it was more me. And I'm really not sure what we can do to improve his results. We're going to see a urologist and see what they suggest.

My AMH was 4pmol two years ago, so I imagine it's crazy low now 😔. I look at all the problems we have now which all contribute to our infertility and I really question if I'm kidding myself it's possible anymore... we're going to go through with the initial ivf appointments and see what they say but I think our odds are so low I'm trying to work out how we justify putting ourselves in so much debt, after all we've been through too, all for the tiniest of chances.

Sorry for the mind dump. Hope everyone else is doing okay xx