Immune/NK cells pred thread #31

[VenusStarr]

Hi all, we've fill up the last thread, so starting a new one. Will start tagging but feel free to add anyone I miss!

@Faithhopelove83
@Zest11
@HopefulH
@InvisibleDreamer
@Ifitistobesaid
@LuckyNo14
@MrsMargot
@comingsoon786110
@Tgrf55
@JessL12
@LuckyNo14
@Sophi81
@MrsMargot

@Zest11 With superovulation you take letrozole from cd2-6 and then have a scan to check the follicles and lining. Depending on that you'll be given a trigger date, using ovitrelle. I was then told to have sex that night and the next 2 days. Start pred 2 days after trigger. Then test day is 12 days after trigger. This is the first time I've done it and its gone to plan. Dud ge talk to you about superovulation?
I understand your thoughts on giving ivf another go but not sure how you feel about it.

Hope af arrives today for you @HopefulH So you can get started on a new cycle. Keeping everything crossed that the new dose helps 🤞

Hi everyone, I'm new in this thread. I'm doing IVF and have had 3 MMC. Last MC was tested and it came back as normal. It turns out I have a T cell imbalance causing this issue. Anybody has had this diagnosis?

@VenusStarr thanks for setting a new one up!

You're only a few days behind me, I'm 3dpo today and due to take my GCSF injection on Sunday which will be 6dpo! Yay to cycle buddies 🙌🏼.

Hope everyone else is well ❤️🙃

@comingsoon786110 oh that's good! How are you counting dpo, I'm unsure if I have ovulated yet, seem to be having a slow rise on my temps... gcsf for me is Wednesday 🙏 this is a good cycle for both of us x

Welcome @Cherry35 I'm so sorry for your losses. We tested 2 of mine and they were both healthy, it's heartbreaking ❤️ I don't have the T cell issue, what are they suggesting as treatment? Are you under a specialist clinic now? X

@VenusStarr well I had my surge on Sunday so I am guessing I ovulated on Monday, I'm just going according to my pre-mom app.

My LH then went down again and decided to increase again yesterday but then dropped again today so no idea what's going on there.

I had my ovulation intralipids last Wednesday and started all my meds yesterday at 2dpo.

How do you know when to take your GCSF injections if you don't know if you have ovulated yet? My protocol says on the 6th past ovulation and then to take a pregnancy test 5 days after that.

@comingsoon786110 I'm doing superovulation, so did my trigger on Tuesday night, so just going by my plan from crp. I did actually get a positive opk on monday evening and it felt like I was ovulating on Tuesday evening, but my bbt is still lowish (but rising). I probably have, just overthinking everything. Sounds like we're on a very similar timeline 🙏

I've had my bloods back too - the cyst isn't sinister which is good. But my thyroid is raised, despite being on 50mcg of levothyroxine 😒 its 3.something. feel like this cycle is already a bust! Ugh. Just waiting to hear what they want me to do...

So it’s another loss full on bleeding can’t believe this is happening guess I’m never going to be able to have a baby can’t believe I was stupid enough to think this might be it.

I'm so sorry @InvisibleDreamer is it confirmed? Just that I know of someone who had a massive bleed and it turned out to be a hematoma. Did you have your meeting with Dr Gorgy?
I'm sending you a big hug ❤️ xx

@VenusStarr woke up with hot sweats this morning so was just taking test this evening for reassurance when started bleeding. Test is much fainter so I don’t think there is any doubt. I can’t understand as I’m on more drugs than last time with a PGTA embryo and got less far. Now I’m thinking my progesterone was too low even though my clinic said 38 was ok. Yes had my meeting with Dr Gorgy who suggested intralipids which I’ve never really wanted to do but now I’m wondering about everything. My clinic wouldn’t put me on the higher dose of steroids that he recommended so now I’m wondering if it was that even though I was still on a slightly higher dose than before. I just don’t know how I'm going to go through it all again. This was the only thing keeping me going through the grief of losing Milo, I’m just at rock bottom now.

It's really hard when you try to trust the clinic and specialists and then they don't agree @InvisibleDreamer my progesterone was 56 in my fresh and it was a chemical and so I asked for lubion as well and my levels were over 140 in my FET. I miscarried for other reasons but don't think it was progesterone. So I'd definitely ask about that.
What steroid dose was it again?
This is really heartbreaking, I'm sorry this is happening 😢 💔

@VenusStarr I even took some extra progesterone I had left over because I was worried that it want high enough I added in 200 utrogestan at least every other day alongside the 400 cyclogest twice a day. I booked a test for Tuesday to check my levels (progesterone & ANA) so I will probably still have that done just to see if it gives any answers. I was taking 15mg steroids but sometimes upped this to 20mg if I felt I was having a food intolerance flare up just in case. Dr G wanted me on 25mg. My immune system was definitely depressed though because I’ve had a cough/cold for about a month and I never get sick. I don’t know if it’s possible to be over suppressed?

Thank you @VenusStarr , @star2022, @InvisibleDreamer , @HopefulH and @Zest11 ❤.
Just catching up (thread has suddenly got busy!) Will post properly tomorrow but just wanted to say in the meantime -

I am so very sorry to hear that your bleeding has progressed and it's now looking like a loss @InvisibleDreamer . It's so cruel and heartbreaking. I can understand how devastated and rock bottom you must be. I hope you have people around you to support and comfort you. I'm so sorry. Sending you love and a big hug xx

@InvisibleDreamer I'm so sorry. It's really awful. I am so gutted for you. Utterly heartbreaking.

@InvisibleDreamer I understand your worry about oversuppression. When I had my loss after ivf I asked Dr Shehata if I was on too much immune medication (25mg pred, 400mg hydroxychloroquine and intralipids, plus clexane, aspirin, cyclogest, lubion) and he said no. We later found out baby was healthy so he added another immune drug called gcsf to my protocol as he felt my immunes hadn't been controlled enough.
I hope you are able to get some answers from Dr G. How are you feeling today? ❤️

@VenusStarr thank you for explaining, it was briefly explained but I didn't really see the point of it in our situation. I went to Dr s hoping his tests could work out why we don't get pregnant in the first place and he couldn't say whether the nk cells were causing that or not. I thought I either try naturally or do IVF again. I wanted to try naturally (with the drugs) but I had been doing that for many years and I was put off with SO when he said people tend to have success, if they are going to, at months 4-6 of SO and I thought that that was a lot of money we could end up spending to then go back to IVF anyway. However, I didn't consider at the time it could actually work! My thinking was that although IVF has failed for us many times, it is also the only thing that has worked for us. It's so hard to know what to do,

Hi @VenusStarr I was already doing IVF and after the second MC saw a Reproductive Immunologist and said I have a T cell imbalance causing my embryos not to grow (they all die in between W5 - W6). Only last one could be tested.

However, my Fertility Specialist don't really believe in immune issues but at least agrees with me taking the medicine.

Last MC I was on clexane and aspirin, medicines didn't help. Next transfer I have to start with steroids and double the progesterone. Although my FS says using steroids is all "experimental".

What is your immune diagnosis? I'm trying to google more about mine and can't find any reference to this issue. I wonder if it means that my immune system is too strong. I haven't had covid even as close contact 3 times.

@InvisibleDreamer I'm so sorry you are going through this. I know how it feels to be excited that the treatment has worked only to be let down again! I went through the same thing in January when I had my 5th miscarriage.

@VenusStarr ohh okay I get you! Hopefully this is a positive month for us both (literally)🥹. It's so annoying to think everything is going smoothly and then you get hit with another obstacle! When will the clinic give you an update on what to do next?

Hope everyone else is well 🙏🙂

@InvisibleDreamer I'm so sorry for what you're going through. This is all heartbreaking.

May I know what's your diagnosis? Just because you mentioned food intolerance. Are you celiac? I've read that this disease can also cause MC"s.

@Cherry35 it's so frustrating when you get conflicting information from professionals. My ivf clinic weren't happy with my immune protocol and tried to get me on less meds for my last transfer, Dr Shehata wanted me on more. We're not doing ivf again at the moment, just trying superovulation.
My issue is overactive nk cells, I have a normal count but extremely overactive in pregnancy. I think 0.8 and under is normal and mine is 3.05. I've lost 6 pregnancies, 2 were on full immunes and ivf. I've not conceived since 2021 now.

I really hope so @comingsoon786110 🙏 they replied last night, I need to go up to 75mcg for 6 weeks then retest. So waiting on my GP. Got a feeling I'll just have to pay crp to send me some 😒 have spent so much money on this cycle. But if it helps 🤞

@Zest11 do you have high activation? Dr S said to me he thinks the activation is related to our infertility. I have to have meds from ovulation and am on the full complex plan, plus gcsf now 🙃 it's all a bit if a minefield isn't it? I feel traumatised from ivf cancellations and failures last year and just can't face doing more yet. But superovulation isn't cheap with all my meds. Spent over £1000 on Tuesday.

@InvisibleDreamer I'm so so sorry to hear you've been bleeding and think it's another loss. Thinking of you and hope you are okay! Hope you have lots of support around you x

@VenusStarr just feeling numb now thanks for asking.
@comingsoon786110 how do you keep
going? I’ve lost all faith now that my body can do this. Did you ever get any answers for your losses?
@Cherry35 I have M.E. With multiple food intolerances. I’ve been tested for autoimmune disease but nothing has come up & im not celiac. I also had my cytokines tested and a endometrial biopsy which all came up in range if slightly in the higher side of normal so been on clexane and aspirin as a precaution. I’ve also been on steroids as I was last time but upped the dose slightly to 15mg (my clinic didn’t want me to go up to 25mg as recommended by Dr Gorgy). This was originally because I had high thyroid antibodies but all my thyroid levels are optimal now. I’m at a loss as to what else I can do and why this has ended much sooner than last time even with all the drugs.
@HopefulH thanks my OH has managed to get today off which helps but will have to work Saturday & Sunday.

@Cherry35 the only result I did have was ANA 1:320 speckled. I think that’s why Dr G wanted me on more steroids.

I've just had a letter from the clinic saying its an endometrioma, not a dermoid cyst like I was told on Tuesday. So that points to endometriosis 😪 I've tried to contact them but not got through yet. Feel like this is all over before it's even got started.

Does anyone here have endo? I do have adenomyosis. Does anyone know what management would look like, or do they always suggest removal of endo? I can't afford surgery on top of everything else we've done so far.