Immune/NK cells pred thread #31

Hello everyone, I'd love to join this thread. I had my fourth miscarriage last week - an early one at 5.5 weeks, but feeling so exhausted and fed up of this.
I've had the NHS recurrent miscarriage tests and it's only shown mild PCOS, and I've taken metformin, letrozole, supplements, and cyclogest from ovulation and still miscarried.
So I've booked an appointment with Dr Shehata on Tuesday to have NK cells checked and for DP to have the sperm DNA fragmentation test. It would be lovely to have the support and advice from you ladies as we go through this journey too. I've read a lot of the past threads and I'm rooting for everyone here to have their much deserved babies.
Also @InvisibleDreamer I'm so sorry about your loss, I know how raw you must be feeling and hope you are being well looked after. xx

@VenusStarr Please have hope! As @star2022 has said, the immune meds can be enough to lower inflammation caused by endo - so with the new added meds this cycle it could still work for you... that's what I'm hoping for. I understand it's hard to take the knocks all the time however and agree, it's a less than ideal way to be told via letter, when this wasn't mentioned to you in person. Let us know how it goes when you bring this up with CRP.

@star2022 I'm glad your hysteroscopy went so well. Hopefully you can move forward now and it's nice to know you've had it done by someone you trust as I think NHS it can be a bit hit and miss anyway!

I don't really understand why they are upping my letrozole dose... maybe I should have asked that. I'm just going along with it and will see what happens this cycle. I did actually come on my period the other day so I'm on to the next cycle and I really don't understand why it came early. I'm thinking it maybe actually came on time, and my previous two cycles were out of whack - because I came on 14 days past trigger, and I think I probably ovulated shortly after trigger - so I don't know if that sounds about right? I'll definitely ask about progesterone though as I do historically have low progesterone, because I don't think I ovulate easily. Who knows. Every cycle just seems so different!! I'm now booked in for SO and Intralipids this coming Friday, so I'll see what happens this month. I'll be on CD 9 this time.

Onwards... hope everyone else is okay.

@InvisibleDreamer thinking of you and hope you have some people looking after you this weekend x

@InvisibleDreamer I am so so sorry to read this, i'm heartbroken for you. I really hope you have some support around you while dh is at work this weekend, thinking of you x

@Zest11 thank you for the luck, I had my polyp removed which all went well. Better than I expected and found that it was actually a 'big polyp' around 1cm, not the half a cm that was seen on the scan so i'm glad we got it done privately. Also just noticed my nhs urgent referal which should have been reviewed by 3rd april has now been pushed back till the 9th june! So i'm glad i've just got it done and didnt stick around for the nhs. We've been given the go ahead to continue with SO so i'll be back on meds at the end of this month. I understand your concerns with not knowing what to do, I guess you just have to go with your gut and how you feel. I was the same as @VenusStarr in that i really couldn't do a 3rd retrieval again as i was pretty scarred by last years rounds and stresses with the clinic. Will you be taking dr s meds alongside ivf?

@VenusStarr I am so so sorry to hear this, was this picked up on a normal scan with Dr Edge? Is there any way of a confirmation whether it is actually endo? I think it depends what stage endo it is for removal, but also I do think the meds we're on with dr s can help lower the inflammation so there's a possibility that it could all still be fine without needing surgery? I hope you manage to get some answers. I can imagine it being really stressful having a bit of hope and then getting hit with something all the time. I really hope you're okay ♥️

@HopefulH sorry your first SO cycle didn't go to plan, I also wonder why they are increasing the dose rather than just bringing your scan date forward? Was it your period that came while you were on progesterone? Is it worth getting a progesterone check done to see if you need a higher dose?

@VenusStarr sorry to hear re potential endometriosis. I'm questioning if I have endometriosis and have been pushing for a referral to a nook specialist on the NHS - which is taking ages.

I apologise in advance for the following waffle; I've spoken to Dr Shehata a few times about how having endometriosis and adenomyosis could be causing all my problems and my losses - and I was kind of shot down that these conditions don't cause recurrent losses - but can cause infertility... Which in my opinion amounts to the same thing.

A quicker way to get a referral into the NHS system would be if you have a consultation with a reputable Nook endo specialist privately, who can then write to your GP with a recommendation for referral. You can then speak to you GP and either request a referral to your local gynae for a laparoscopy or you can be specific if you want to and request an out of area referral to a specialist, based on all your history. You want to seek excision not ablation, so if going via general gynae make sure you discuss methods of removal.

One thing I would do if you do decide to pursue seeking a lap via NHS is play up the pain side of things vs infertility. So say you have considerable pain around your cycle and it's getting worse.

Sorry I've gone on a bit here. I'm kind of in the middle of all this at the moment so wanted to pass on all I have learnt thus far.

I have read that endometriosis and adenomyosis can cause a heightened immune response - and also that after a successful laparoscopy (depending on severity and level of excision) that fertility can often be successfully restored! Lots of ladies after years of heartbreak have a successful pregnancy after a lap.

Currently I'm pursuing both routes - seeing if Dr Shehatas protocol can help me, if I can actually get pregnant again, whilst waiting for my referral appointments to come through for a lap with a specialist.

Dr Shehata said to me that his treatment for ladies with endometriosis and adenomyosis is the same - regulate and bring down immune response - so - I'm hoping that the meds might bring down inflammation enough to help things happen. So your plan could still work now you've added in the extra meds too!

Hope all this info helps. Don't give up. This might be the real answer you've been searching for. X

@VenusStarr ahh that's annoying they have found you could have endo at this stage. Have you ever had a laparoscopy on the nhs? I don't know how long the wait would be though. I had one several years ago and I want to say it took a month or 2. Could that be an option for you? If you are with a nhs fertility clinic already (as I was) that could speed things up for you but by the sounds of things I'm not sure you are? Otherwise it may have to be the long route via the GP.

I just read back through my notes and yes I have high activation but normal count. Not excessively high but enough to be in the high category rather than borderline or normal! Yes I worked out the costs for SO and it was a lot! I worked out it would be approx £1000 a month and that put me off as I just sort of assumed I would have 6 failed goes and then end up going back to IVF. My husband and I are coming to the end of all of this so I thought one last EC and see where that takes us.

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

@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.

@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

@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.

@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 🙏🙂

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.

@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,

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

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

@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?

@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.

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.