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

@TammyinCork great you got a second opinion and that you only needed a small steroid dose as they are not ways fun to be on in higher doses! Fingers crossed! Ive been a bit jittery and sleeps a tiny bit more unsettled, i woke up at 4 am and just couldnt get back to sleep. What I did find helpful was taking the progesterone in the evening as it was making me quite drowsy.

@Rainbowchaser87 glad your new regimen is suiting you better. Did they say that steroids can make it a bit harder to get pregnant? Are you able to start TTC again after starting the hydroxy?

Update from me. High NK cell activity. Started the intralipids, progesterone and prednisone this week. Feel a bit crappy but not horrendous. I also had an inital appointment with my NHS recurrent miscarriage clinic. They will look into clotting factors but she said that there is usually no single identifiable cause for recurrent pregnancy loss and that I just need to keep trying. I asked her about reproductive immunology and she was quite firm that she thought it was a bad idea and that she felt steroids and intralipids in healthy people is not a safe thing to be doing without prooper evidence - rated red by the HFEA. She tried to steer me heavily away from the approach. She also said wonders why these RI clinics wont release all their evidence and research and is skeptical about why they still havent done so. So just another side to the coin. I found it really jarring actually, that 2 consultants could have such opposing views. That being said I am tired and after 3 MCs I just want to feel like Im doing something. Wondered if anyone else had sought a second opinion or had seen their recurremt MC team via NHS. It can feel overwhelming sometimes!

Hi all sorry for late responses! Was manic up to the end of term, but on Easter holiday now which is lovely.

@Jecca88 my in-law's place is south of Valencia, its really lovely but quite remote so would need to know where all hospitals are and English speaking ones too as neither of us have great Spanish. If we don't do that we'll definitely do a staycation! How was the GD test? and the appt with Dr S? Are you discharged?

@Deerdancer34 How are you lovely? I'm due mid July. No thoughts whatsoever about birth yet lol. Wishing you luck for testing this cycle.xx

@Auberginesky thank you! I also have no understanding of people who are relaxed in pregnancy lol. My friends used to say things like 'oh I'm off to see the baby' when going to a scan and I'd just be so confused as to how they were able to be so sure ha. How have you found the meds now? I echo Deer and say take them as early as you can .. sometimes this was 4am for me! But it definitely helped. When using them before a positive test I also took low-dose melatonin to help sleep. I am a bad sleeper generally though so the Pred just essentially made it worse.

Re your last message, I've had conflicting advice from IVF consultants vs Recurrent MC consultant and it is SO frustrating and quite anxiety inducing. It makes you feel like you just don't know what's right! Sadly I think this will always be the case. RI clinics are very passionate about their methods and theories and I think because it takes so long for scientific evidence and studies to build up, especially with pregnant women it will be hard to ever get a definitive answer. For example, the HFEA also puts PGT-A embryo testing in red - which I really don't agree with and think its probably one of the reasons my current pregnancy has come so far. IVF doctors were also strongly against the use of Hydroxy and said there was not enough or any solid evidence for it supporting pregnancy. Its a minefield!

@TammyinCork so sorry about your blast and the T7 - I've never heard of that one so can't offer much advice but I do know how it feels when it feels like IVF has 'failed' so I am sending you such a big hug. The Dr Thum protocol sounds very sensible and doable - how are you feeling on it?

Not a huge amount to update on my side - I'm 23+2, had my appt yesterday and Dr S did not make an appearance haha. I was fine though because it was the same recurrent MC consultant I'd had last time who was so nice to me about my anxiety and he gave us another bonus scan which was amazing. Baby is extremely active (on scan). My preeclampsia growth scans start in 2 weeks which I'm hoping go okay. I've got my first mental health appt coming up too which is good.

Love to all xx

@Auberginesky @TammyinCork ahhh not many people know of Estepona - I also go every year but thats because my best mate has a villa out there. It really is lovely :)

Sorry to hear about the IVF @TammyinCork - i really feel for you. Putting your body through so much. I haven't heard much of Trisomy & either. Will be crossing absolutely everything for you in May.

How are you doing on the meds @Auberginesky are you getting enough sleep?

@Hopeandfaith1990 nearly at 24 weeks viability. Amazing you got reassurance scan and saw them moving around lots. I actually didn't know you had Preclampsia, so is that a scan every 2 weeks till birth? I too have no idea what my birth plan is - just want the safest way for the baby.

I had my GD test on friday and sadly i failed the test so I have got it. They gave me a monitor to check my bloods 4x a day. When the midwife told me i burst into tears and couldn't get any words out, i know it can be managed but just feel quite close and didn't want another hurdle. It is also so much to think about - i just want to enjoy food as it really is the only enjoyment, but everything I have has to be measured and paired perfectly, not to mention my finger tips are already bruised and i haven't even done a week. Baby is measuring 70% percentile, so not too big, but with GD they tend to like to induce at 38 weeks or defo not go over 40. Just hope he is ok and my apple juice craving hasnt done any damage :( also had the sugar flu this week - constant headaches from cutting it out. It will probably do me good being at bit healthy.
I am super grateful and will do anything at this stage. I think after week - they will see if i need Metformin or not. Currently keeping within the spikes.

@Jecca88 ah so sorry re the GD. Please don’t blame yourself, I did so much reading about it and it’s essentially hormone based and out of your control so apple juice will absolutely not have done any damage. Totally understandable to be upset, but they’ll be so good at supporting you managing it etc. I do know what you mean about food being the only joy - really resonate there.

Atm I don’t actually have preeclampsia but I tested positive for some of the potential prediction markers so they seem to be essentially treating me like I do have it? Not complaining really cos I’ll take the extra scans lol but they’ll be monitoring my PAPP-A as I progress to check levels I think xx

Thanks @Hopeandfaith1990 Yes i have lots of extra appointments/midwives and all sorts - so being managed well.

Ahh so you had high risk for it - but haven't developed yet. Is there anything you can do to prevent it? How do they monitor PAPP-A is it scans or blood pressure?

It’s by blood pressure / scans / bloods & urine (protein in urine I think) . Not really sure re prevention - I think just all the usual things like exercise healthy diet low stress ? But the midwife told me I was right on the bottom end for the markers so I’m hoping to avoid it 🤞🏻🤞🏻

glad you’re being well supported. you’re right, it’s just the last thing you need after such a challenging journey to get to this point but also of course we’ll do anything we can to get to the finish line now! Are there any side effects from the metaformin? Xxx

@Auberginesky Its so hard isn't it. You just want to be scooped up and looked after instead I felt I was just cast off and left to flounder... When I went to RMC at the hospital the Consultant I saw said she wouldn't give steroids to her nearest and dearest...(even though I knownthey had done pre-Covid!) but my point is well what will you do for me? They just said to keep trying but they don't factor in the emotional exhaustion of Recurrent Miscarriage. Plus for me I lost all my babies at 5.5weeks so surely that says that my body needs something to help keep the baby!? I really feel for you and tbh Dr S just gave me a plan and a feeling I was doing something...

@TammyinCork I am so sorry 😞 Where are you now?

@Hopeandfaith1990 Oh lovely a summer baby! Highly recommend spray water for the hospital - got me through labour and the TENs machine - so hot in there! Hope you're appointment goes well.

@Jecca88 Ah I'm sorry my love but just know you are not to blame at all. You've been through so much already, so you can do this 💪

I had a lovely time away but alas another negative. For anyone wondering about Progesterone - I felt a lot better taking Cyclogest rather than Utrogestan this time, not as sick but I did wake up early more often. Apparently Utrogestan helps you sleep!

Much love to all 💓

@Jecca88 So sorry to hear about the GD. You have been so careful throughout this pregnancy, so it's absolutely nothing you did, and the others are right - it is more hormone-based. Sending all my good wishes to you!

@Hopeandfaith1990 Fingers crossed for you that you don't get any preclampsia or any other condition! Thank goodness you have very low markers for it.

@Deerdancer34 Gutting to hear that re: your negative, and wishing you much better luck going forward.

@Auberginesky I am skeptical about large doses of medication myself, which is why I am going with Dr Thum's rather than Dr Shehata's protocol (some of the stuff Dr Edge prescribed me is neither medically necessary nor safe for me). But at the same time, I think taking no medication is not an option either. I had my first MC at age 34 then had my now six-year-old, then five more. So they can't all have been chromosomal!

I am now taking Cetrotide and Progynova in preparation for the ERA and uterine microbiome test on 21st April. Boy, was it a hassle to get Cetrotide... In Ireland, we have this weird system where a GP has to write an email of approval to your pharmacy before they will release the "high-tech" medication, even if the prescription comes from abroad, and a health service bureaucrat sitting in a national office has to approve it. I have been on to my GP numerous times and they apparently tried to send the e-mail once but the pharmacy didn't receive it. I asked them to send it again and was told the GP was too busy. Was utterly fed up and furious...

In the end, I gave up and got a prescription from an international pharmacy in Greece that my IVF clinic recommended, who were amazing! A night and day difference in customer service!

What is the system like for getting IVF medication in the UK?

Also had a session of genetic counselling with the IVF lab today, who were very informative. They said Trisomy 7 is one of the rare trisomies, is caused by maternal age, but the number of the trisomy itself is not that important... It could be another one next time, for example. They wished me lots of luck for the next steps.

Hey guys, hope everyone is well.

Thank you @TammyinCork I am actually managing it quite well, got some easter eggs i am saving and might even take them to the hospital with me to have once i have given birth lols. It will be on my essential hospital bag list. The Genetic counselling sounds good and reassuring. How you doing on the meds prepping for transfer? when i got my IVF meds - i just got them from the hospital but thats because i had a round on the NHS - it felt quite easy but this sounds like a faff.

Lots of love @Deerdancer34 sorry about your negative how are you feeling?

How you getting on? @Hopeandfaith1990 i am actually managing my sugar levels really well and they don't need me to go on meds yet - but they will keep monitoring.

Hi ladies hope all is well! A little update from me.. after my chemical with CRP and 1.5 years of being with them I’ve decided to move on. Tomorrow I’m seeing dr gorgy who does other immunology testing which is a bit deeper than CRP. He also offers LIT therapy.

i also had a consultation at Cromwell hospital on Saturday and they have found a polyp on my ultrasound scan.. something that CRP never picked up despite monthly ultrasounds So I hope to have that removed in the coming weeks as it could affect implantation.

im also doing a microbiome test with fertylisis - they could find inflammation due to my polyp but ill send it back nevertheless

hope all is well with you all and you are enjoying this lovely weather! Xx

Hello all! I hope everyone had a good Easter. I had my first mental health appt today, it was good but so draining. I had to talk the doctor through my medical history with TTC and realised in November it'll mark 5 years of starting TTC. Crazy. I'm 26 weeks this week and feeling physically fine, sleep is still crap but what's new! Had a growth scan last week, baby is on 99th centile and 2lb 1oz (apparently this is quite big). However, the sonographer said the measurements are not always (or often!) accurate so who knows.

So grateful to be here but can't believe its taken me 4 years, 5 losses and a failed FET to do so. Sometimes I was just so wrapped up in the journey I lost perspective.

@Jecca88 So glad you're doing well, bossing the GD! You deserve all the chocolate. How are you? How many weeks are you? I'm so excited for you. We still haven't found out the gender but I really think I'm having a boy too ❤ when are you finishing work?

@TammyinCork I was on Cetrotide too - faff mixing it all together isn't it. I was also on the Progynova, how are you finding it all? In the UK it really is quite simple - my IVF clinic just phone an online pharmacy and they deliver to your door. They can also write you a physical prescription and you can pick it up from Asda supermarket! I'm sorry its such a faff in Ireland.

@pagey23 I was very close to doing the microbiome Fertylsis test - I'll be interested to know how it goes! (I just didn't do it because of timing). I've heard lots of good things about Dr Gorgy, fingers crossed you can make some progress with him.

Hope everyone is okay, sending love xx

@Jecca88 Glad to hear you are managing the sugar levels well, and that they are monitoring you closely. That's lovely re: the Easter eggs! Did not like the Cetrotide one bit - as @Hopeandfaith1990 says, it is a real faff to put together (I got my husband to do it). Also gives you low mood... Did anyone else find that?

@pagey23 Incidentally, a polyp was noticed on my scan too, but the IVF clinic have asked me to have a scan on Day 5 of my cycle, just to be sure. Is surgery the only way of getting rid of them / shrinking them? Also awaiting the result of my uterine microbiome test - I had this in Alicante yesterday! Hope all goes well with Dr Gorgy. Incidentally, Avenues in London also offer LIT testing, which might be an alternative!

@Hopeandfaith1990 Glad to hear that baby's measurements are so good, and the counselling sounds very useful, after the incredibly tough journey you've had. I've had some counselling myself, after our sixth loss, and she was really good and understanding.

Progynova and progesterone were OK, although I did feel tired on them. The process in the UK sounds so much simpler and stress-free! Wish I'd started IVF abroad while still living there, ha ha.

My gosh, the ERA test itself was gruelling - I was squirming throughout! The nurse encouraged me to squeeze her hand and I gladly did so!

Hope everyone else is all good and enjoying the warmth (I've just come back to a very windy Cork from 22C in Alicante!).
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