Immune/NK cells pred thread #34

@pagey23 How did your appointment with Dr G go? Where is he based?

@Hopeandfaith1990 I'm so pleased you had a good mental health appointment. Its crazy/frightening when you realise how much time has gone TTC etc but this is your time now 🥰🥰🥰 You're treasured baby 😘

@TammyinCork I hope you are doing ok, how are things going?

@Jecca88 Awww just look at the journey you've come on, its so overwhelming isn't it and then to think you are so close to meeting your baby now! When are you due? Soak up every second and enjoy it, you deserve it so much 🥰

I had another negative, so waiting for my period. Thinking of doing a Hyfosy and doing a couple more rounds of SO otherwise might have to consider IVF which feels really frightening to me, just because I haven't done any research on it...

Lots of love to all xx

Hey guys, its been a bit quiet on here recently.

@Hopeandfaith1990 its actually crazy but i started TTC exactly the same month/year as you - so we have been in this for the same time. How strange, but yes when you list it all out its so overwhelming, you kind of imagine someone else explaining it to you and how heart wrenching it is. How is the therapy going? I also had a Mental health midwife appointment and we decided it migh be best to pick up after the baby is born as it can bring up a lot of anxieties so close to birth. She was also shocked i had not recieved more support from my 7 previous losses.

Wow you have a lovely big baby, do you feel them moving yet? My boy is on track to be 62% which since doing the GD diet has actually evened out a bit, 34 weeks now and he is 5lbs. dunno how accurate they are but starting to feel swollen and really getting a waddle on. Oh wow - imagine we both have boys. I started my NCT which has been nice - but i cried in the session yesterday - quite embarrassing but i fear we are the only ones in there that have had fertility struggles, or maybe im just being too vunerable. But learning a lot and my husband is finding them very useful.

Went into the office for prob my last time yesterday and my team bought me such a cute hamper - its all feeling quite real and still can't believe people are buying me gifts for my baby. Just cannot get my head around it.

@TammyinCork hope you're well my love - sending you lots of love. Any results back or what are your next steps?

@pagey23 totally understand your frurstration with moving on from CRP after 1.5 years. How did the appointment go with Dr Gorgy - also love his name. when are you thinking of getting the Polyp removed?

@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!).
**

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

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.

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.

@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?

@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 💓

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?

@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.

@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!

@pagey23 sorry love for my late reply! I have been on SO for like 7 cycles last year…It didn’t work for me but I think it was because of steroids l…they were too strong for me and that’s why I am on hydrox now. I am enjoying freedom from scans and intralipids tbh!
because of the injection u had u needed to take a month off from ttc right? Are u back on ttc now? Xx

@Auberginesky All the best with your treatment! I think Dr S is very good at what he does when patients have high or active NK cells. I got a second opinion, however, as I don't have an issue with mine, and did a retest with Dr Thum. We spoke last Saturday and he said I only need 5mg prednisolone from Day 10 of my cycle before the transfer, rather than 20mg as Dr Edge said, and no intralipids! Which is a relief, as I am intolerant of soya and allergic to peanuts! (I was on prednisolone for two natural cycles and did not get pregnant, whereas I always got pregnant quickly before). And I agree with @Deerdancer34 to take it first thing in the morning.

@Jecca88 How fabulous - Estepona is just gorgeous! And it is so special to feel the movements! Hope your GD test went well.

@Hopeandfaith1990 Yes, so much better to recycle and use second-hand stuff, and wishing you well for your consultation with Dr S :-)

@Deerdancer34 Enjoy Wales... A beautiful place to be! Wishing you so well for the next cycle.

@Waitingforthesunshine24 That sounds like a good plan. Dr S is really good on most immune issues, but unfortunately, the protocol can be too strong for others.

Unfortunately, it was bad news for us on this second IVF cycle: the 1 blastocyst tested had Trisomy 7 :-( We will be getting genetic counselling through the IVF clinic. Has anyone come across this specific trisomy before?

I have gotten the medication needed to do an ERA test (which is pretty much the same medication needed for transfer, so it's like a mock transfer). ERA test is in April and transfer of the euploid should be scheduled for May, as long as there are no issues... Very nerve-racking!

Last Saturday's consultation with Dr Thum went very well (I went to London to do NK cell and thyroid re-tests at the Lister on 17th March). He suggested 5mg of prednisolone on Day 10 of my cycle before the transfer, and no intralipids (which were prescribed by Dr Edge, and which I was concerned I might be allergic to). It is a much more moderate protocol, as I don't have an issue with NK cells (and didn't last July when I did the first tests with Dr Shehata / Dr Edge).

@Auberginesky I would say take the Prednisolone as early as possible to help with insomnia and have some good podcasts if you do wake up or have trouble falling asleep. I haven't had a problem with insomnia this time but Days 7-10, I often feel quite paranoid/heart beating fast etc - so try and be relaxed as possible, I often go on a brisk walk to help - I'm really bad if I've been cooped up! I also tell my husband to not wind me up during the last few days 🤣 Weight gain, may not affect you, when I took pred the very first time I blew up like a balloon but the 2nd time round and this time round I've been fine. I'd try not to worry too much about symptoms because they may not happen!
I think they give Utrogestan tablets now, probably because most people prefer tablets. I've gone back to Cyclogest pessaries for this cycle because I'm wondering if the Utrogestan made me feel quite sick, I'll let you know next week if I feel less sick this time!
I don't know what to say about intralipids...I can't help but feel a bit dubious about them but then I'm kinda scared to try without...I asked if I had to do them and the answer is 'We wouldn't advise treatment without them' - just guilt trips you in my opinion!
Good luck for this cycle 🤞💪🤗 xx

@Waitingforthesunshine24 and how are you getting on? Hope youre managing to hold your head above the water 🫶

@Jecca88 glad you enjoyed Spain, Estepona is a beautiful place, we go every yearas I am half Spanish.

@Hopeandfaith1990 hang in there, its ok to feel terrified after all youve been through. My mental health is honestly in tatters these days. My best friend just told me she is 6 weeks preg. She wont be doing an early scan and will wait til the 12 week scan. Feelings so sad as my last miscarriage was due 3-4 weeks ahrad of her. Also so envious (but simultaneously happy) that she is so un worried by everything. Im probably more anxious than she is about her pregnancy!

@Deerdancer34 so sorry about your neg test and feeling like crap on the steroids. Any tips for managing the synptoms? I start my prednisone and progesterone tomorrow. Do you know why Dr S prefers tablets to pessaries by any chance? And do you have any insomnia?

So update from me. Just had 2nd appt with Dr S. Confirmed high NK cell activity. Treatment is prednisone, progesterone tablets and intralipid infusions. I had 1 infusion (bloody expensive.. dies anyone know how robust the evidence is because at 400 a pop its eyewatering). I start the progesterone and prednisone tomorrow as I ovulate and can try asap. Im so worried about the potential insomnia, mood swings and weight gain. Is it really that bad?? Any tips to feel more human during these meds?

Love to all

@Hopeandfaith1990 Aww an expectant Mother's Day card, I love that 🥹
@Jecca88 I'm so pleased you had a lovely relaxing holiday!! Ughh I hated the GD test, apparently they used to use lucozade, would much rather have had that!

Really lovely you are both feeling movements 🥰 so special! When are you both actually due!? Tbh I only bought the big stuff 2 months before (purely because I got stuff in a summer sale!) and then I barely bought any clothes because you don't know how big baby will be & you'll be gifted stuff too. I got 1 pack of 0-3months babygrows & then a week before I was due I got some 'Up to 1 month' babygrows off Vinted (Vinted is incredible for baby stuff- highly recommend!)

I'm on my 8th Cycle...got that hope again but feel nervous... Going to see my parents in Wales on Sunday in hope its a good distraction! Lots of love to all 💓

@Hopeandfaith1990 that's good - about donations - always best to recycle too and saves you money.

Where will you look at going? might even be nice to do a staycation not too far?

I am seeing Dr S on Monday too - hopefully to be signed off from the clinic. But haven't seen him for over two years.

Got my GD on friday - not looking forward to it.

Hey @Hopeandfaith1990 yes you should look at booking something. I got the all clear from midwife and fit to fly letter. I did look at hospitals for sanity and got the GHIC card - as maternity care is free in Europe. Totally know what you mean about movements, tbh - the consistency has only really just started - so don't fret or track them till 28 weeks -32 weeks.

We have been given loads of stuff from Sister in Law, my mum kept loads from my nieces and nephews - the only things we need to buy are the buggy and my husbands work have very kindly offered to buy it for us. I know what room the baby will be in - but still holding off buying anything yet, but we may decorate it neutrally next month. Do you have people that will donate stuff to you? it made me feel a bit better rather than purchasing myself. Althought opening the boxes and going through baby clothes is kinda mad. We had our first gift from my husbands boss' wife on holiday - some little newborn babygrows and it just so sweet to be in the position that people are buying us stuff for once, but also there is this added pressure that people assume it will all go right. Still can't get used to the idea we are having a baby.