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!

@Newbeginnings22023 I'm so sorry about your loss, that is heartbreaking and must have been so stressful being in limbo too. I hope you're doing as ok as possible and being well looked after. Did you PGTA test the other embryos that were created from your IVF cycle, which you'll use for the FET?

@VenusStarr yep we are planning to go ahead with our first IVF cycle in Feb if not conceived before then. I've never had any losses tested so it will be a useful diagnostic test to see the quality of the embryos and hopefully do PGTA if we have enough good quality ones. The nurse said they could potentially do a fresh transfer of a low quality embryo (which couldn't be used for PGTA) so that will be something to consider at the time. In some ways it seems unintuitive to intentionally transfer a low quality embryo but at the same time it can sometimes work so maybe worth a go if I'm brave enough to face another likely loss! I'm terrified about IVF too. It feels likes the stakes are much higher and I'm scared I'll lose a PGTA tested embryo on the full immunology treatment, which will be devastating.

That's fab about your AMH, amazing it has doubled, so pleased for you! It's a great sign going into IVF.

@VenusStarr @Newbeginnings22023 I'm also worried about my progesterone as my luteal phase is super short without Cyclogest (8 days) and I've had low progesterone in pregnancy when on 2 x Cyclogests (although unclear if that was due to impending miscarriage). My IVF clinic (Care) said they don't test progesterone before and after transfer but maybe I should push for this and explain my history? Is Lubion something that boosts progesterone?

@clhiu argh sorry about your BFN. But I agree that 8DPO is super early and I don't want to get your hopes up, but could the spotting be implantation bleeding? Keeping my fingers crossed for you, but if it's truly a BFN hope AF arrives soon as I know the limbo period between BFN and AF is the worst.

I've been reading about silent endo and how it can be a common cause of recurrent MCs, feel I want a hysteroscopy to check for it! @VenusStarr am I right in thinking you had one done before on the NHS? Was anything found and was it through your RM clinic?

big hugs to all! xxx

@Lily1990 thanks for your kind words. I’m in this dreaded phase of waiting for the bleeding to start. I stopped the progesterone 2 days ago and they said to expect a bleed within one week. This one will be especially heavy because it’s following a fresh cycle, almost two months of hormones piled up.

I didn’t test the embryos because my doctor doesn’t really believe in it. She says it can increase the chances of a live birth but it’s equally good to give every embryo a chance. This is why I’m expecting some of my transfers to fail unfortunately. Such a brutal process.

I can see you’re planning to do PGTA which is what I would’ve done too. Untested embryos can work too though, it’s really hard to decide. I’ve seen women at my clinic do a fresh transfer then PGTA for FETs, so it’s worth a try.

I think you should definitely push for progesterone testing especially since you think it may have affected your chances before. I had to push for this too last year after a failed fresh transfer, and they ended up testing me a day before my FET.

For my FETs I’ve always had 2 Cyclogests and 2 Lubion injections daily. Lubion is expensive but I’ve found it to be effective in terms of sustaining good levels of progesterone.

I actually had a hysteroscopy done privately 2 years ago, but I was diagnosed with endo, so this was necessary for me. If you have any questions on this let me know xx

Hi @Lily1990 I've had 2 hysteroscopies. One was nhs and they found a polyp and removed it. Second was with crp as I had suspected scarring but it was all clear. Was good to check for peace of mind. I'm not sure a hysteroscopy would show endo though, I thought you had to have a laproscopy for that. I've never been offered one.
Sounds like you've got a good timeline and plan. I hope you won't need it. I found 1 lubion plus 2 cyclogest was good for my levels.

I had my protocol review yesterday. All OK, we've decided not to pgta test so we'll be doing a fresh transfer all being well (I'm terrified well have nothing to transfer 🫠) but I asked about testing my progesterone before and she said no because they don't know safe levels in fresh cycles? And I should have good natural progesterone anyway... so said I can do 1 lubion a day... I'm going to do cyclogest as well, especially when I had early bleeding in my fresh transfer before. Don't really agree with that. Plus I've got a few boxes of cyclogest anyway and it is part of my Dr S protocol. We didn't really talk about my immune stuff, so I'll just do that with crp.

@Newbeginnings22023 thinking of you ❤️ I hope your bleed is manageable. I'm sorry this is happening.
I've tried low dose stims to get my lining up as I had bad lining issues leading into my last FET. It worked well for my lining but then I had an issue with my embryos.

Just got to have my nurse appointment and then will get my meds ordered, so am on track for late December start. I've worked out transfer will be around 3 March as I'll be doing 3 back to back cycles. Feels intense. Just hope it works. She said I can do a double transfer but need to see. Part of me thinks that would be a stupid idea because my nk cells are so overactive - what do you both think? (That's if we even get anything). My consultant seemed really positive that we'd have a good response and she's confident I'll get embryos. I do not share that confidence.

Lots of love xx

Hi @VenusStarr best of luck with it all ❤️ sounds sensible to use Cyclogest while you have some anyway especially since you’ve bled before OTD in the past.

Have they suggested any supplements for you to improve egg quality/your chances? You’ve got some time to do this since you’re doing back to back cycles.

In terms of a double transfer, I think you can decide this depending on how many embryos you get in total, but as you say, because of our immune issues I’d worry about ruining the chances because we have so many variables.

I know it’s hard to stay positive but things have been moving in the right direction, so there’s lots to be hopeful about. I’ve also been advised to stick to the Mediterranean diet with lots of protein in the months leading up to IVF.

Thanks so much for your wishes ❤️ I’ll see how the weekend goes xx

Hi all, can I join? I've been following the thread and think I've found my people 🙃❤️

I've had 6 miscarriages and I have one kid DS4 who was lucky pregnancy #4. The NHS haven't helped beyond giving me progesterone and enoxaparin, so we've seen Dr Thum at the lister who found I have high cytotoxicity and a high th1/th2 ratio, so I'm starting 25mg pred from a bfp.

I felt quite optimistic about all that, until we found that DH's dna fragmentation is 36% 😩 he hasn't got a varicocele and we're doing a sperm culture but I doubt he does have an underlying infection so it will come down to 3 months of supplements and very clean living to get it down.

Part of me thinks fuck it, let's ttc now, Dr Thum thought the immune response was the bigger problem. Then I think we could wait, then I also think we should do IVF immediately.

I don't know if anyone has any dna frag wisdom? Everything online seems related to IVF and my head is in a spin

I've had the worst anxiety / panic meltdown this morning 😰 I've been awake since 4am and just thinking and probably overthinking everything. So I emailed my patient coordinator asking to change my doctor. But then dh got up and I cried on him, we've talked everything through and now I feel embarrassed 🤦🏻‍♀️ I'm just concerned the doctor wasn't really taking our history into account and was a bit dismissive. Ugh. So have sent another email saying I'm very anxious and can she call me next week 🫠🫠🫠 omg.

Welcome @RumandSpinach I don't know loads about dna frag, my dhs has come down though and that was just on wellman. So he's on impryl and ubiquinol now. What supplements is he on? Are there any lifestyle changes he can make? Mine could be better on exercise but he is on his feet all day at work.

@Newbeginnings22023 they've not said anythabout supplements for egg quality but I'm taking high strength vitamin D and 600mg ubiquinol so hoping that helps. Are you on anything?
Hope you're OK ❤️ xx

@VenusStarr sorry to hear about your panic episode this morning, I hope you’re feeling better now. It can all be extremely overwhelming.

I can’t say if what I did helped, but I took the supplements you did + Impryl to improve my AMH + DHEA 50mg/day for the 3 months before my IVF cycle. I ended up with the same number of eggs retrieved (11) and embryos (3) as my IVF cycle 2 years ago, but I’ll never know whether it’s because of the supplements I took, and at the end of the day, the most important factor is embryo quality/normality.

I’m ok thank you, I finally started bleeding today which is a relief, I just want this to be over.

@RumandSpinach welcome and sorry to hear about your previous miscarriages. My husband has high DNA frag as well so he was on Impryl to bring this down. We haven’t tested it since but all fertility doctors have said Impryl can bring down the fragmentation. Hope this helps.

Love to all ❤️

@Newbeginnings22023 @VenusStarr thanks so much for your advice about IVF and checking progesterone, it's super helpful. I am going to ask my IVF clinic to check my progesterone before transfer and prescribe Lubion too. And maybe I'll do a hysteroscopy / laparoscopy if we have another loss. Even though we have already spent thousands on tests it still feels like a minefield with potential causes we haven't explored yet!

@Newbeginnings22023 I'm glad the bleeding started and it's a relief for you, as awful as it is. I completely understand just wanting it to be over so you can move on. Hope you're doing ok and feeling positive.

@VenusStarr I'm sorry you're feeling anxious and panicky, I agree it's completely overwhelming. It's such a big thing to go through so it's understandable you want to feel confident that you are in safe hands and being listened to. It's good you raised these concerns now and hopefully your clinic will be accommodating and reassuring.

@RumandSpinach welcome and I'm really sorry about your miscarriages, it's rough. I'm afraid I don't know much about DNA frag except that Impryl is recommended. xx

Thank you @Newbeginnings22023 @Lily1990 ironically the reason I gad a major panic was the new consultant was only prepared to put me on 1 lubion a day and said I wouldn't need cyclogest as well - I'd do one or the other and wouldn't test my progesterone on transfer day (even though the clinic did in both my fresh and FET cycles). It left me really uneasy and I just felt like she wasn't taking our history into account. Plus progesterone supplementation is standard miscarriage protocol now, isn't it? It all very vague and wishy washy and left me really unsettled which caused a panic attack. Still feel unsettled now. But I've got an appointment on Friday with my original Dr, so seeing it as a fresh start. I know I can do Dr S's protocol alongside but it felt like she didn't really give a shit to be honest. I don't doubt I have overthought things massively but I feel better for changing consultant now.

How was your weekend @Newbeginnings22023 I hope you're OK ❤️

Xx

@VenusStarr im sorry to hear you are so anxious. I was similar under Dr S, they were very chilled about Progesterone but I was freaking out so paid for at home self tests through Medichecks which was great reassurance to see how high my levels actually were. I was taking 2 Lubion and Cyclogest coz I was so paranoid. x

@Lily1990 it’s my pleasure. It really is a minefield! I hope it all goes well for you at your next transfer.

@Lily1990@VenusStarr thank you both for your lovely messages ❤️ I have already reached out to my consultant to schedule an FET during my January cycle. Planning ahead helps my mental state. I’ll also request progesterone testing the day before transfer as I don’t want to take any chances. Have requested a natural modified FET this time.

@VenusStarr I completely empathise with you and I would’ve felt the exact same way. Either or feels insufficient especially when you know you’ve had issues in the past. Also the NICE guideline now states that women with recurrent miscarriages should be supplemented with 2x Cyclogest per day as standard. Clinics typically add Lubion on top for those with low progesterone, like us here. I’m glad you’re seeing your original doctor now and can hopefully put a new plan in place.

I’m feeling much better now that I have planned the next steps. Also seeing Dr S next week to see if my plan needs to be adjusted for my next transfer.

Hope everyone is doing ok xx

Thank you @StillTrying10000 I hope you're doing ok ❤️

I'm pleased you're feeling much better @Newbeginnings22023 having a plan definitely helps. And it sounds like you've got a clear plan for what you want to be in place. I hope seeing Dr S gives more clarity next week too - let us know how it goes. We'll probably be cycling at a similar time.

I genuinely think the anticipation is so hard. I'm flitting between time feeling like its standing still and nothing is happening to time is speeding ahead and I'm left behind. I hope once I've got my plan written down and got the meds in the fridge, I'll feel a lot more in control and can focus on other things.

Lots of love all xx

This might be a no brainer but I'm not sure I'm able to make sensible decisions anymore so I wanted to ask you guys.

I'm currently really poorly with Flu and a chest infection. I think the immune meds have finally knocked my system right down as I can't ever remember feeling this poorly. Unfortunately this is timed with two perfect sized follicles, which I've confirmed as having successfully ovulated - plus my lining is 9mm. I don't feel well enough to take the Pred. I should have started yesterday... what would you do? I'm also supposed to be on cyclogest but again I couldn't quite face it feeling this unwell! Typical the one cycle things look great this happens

@HopefulH I'm really sorry to hear about the continued struggles and disappointments, immune cycle over immune cycle, and now this when you seemingly have the perfect follicle sizes.
There's not much advice I can give other than probably I would skip the immune suppressants personally if I was really ill and felt like I needed my immune system to do the work. Dr Edge told me to stop the Pred immediately when I had a dental abscess for example (and that was just my first ever cycle on steroids!) so I wouldn't want to risk my health, but it's a personal decision, I get it.
Would you say this is the most promising SO cycle you've had in 12-13 in terms of follicle sizes and you never came even close? If so I can see why you'd be reluctant to skip the Pred, but on the other hand if not, if you've already done 12 cycles and they all ended in BFN, was the Pred really helping? I don't know if this is helpful at all or whether I'm just thinking out loud, easier said than done what I would do or feel when I'm not in the position.
Have you asked CRP what their stance is? I'm sure they will advise like they did for my abscess.

Hi, @HopefulH it’s a bummer, isn’t it. I have also been feeling the effects of immune-suppression. In the last month, I have had a cold/cough, a nasty bacterial eye infection that needed 2 kinds of antibiotics from A&E last week, my first UTI and now quite bad covid. I stopped hydroxy temporarily on the basis that I would rather not risk losing my eyesight and not restarting now I’m covid positive. We’re not ttc this cycle so thankfully no pred. I am however planning a FET in January and a testing cycle (Alice/Emma/ERA) in December. Not sure what to do now - have emailed clinic to ask but I’m not sure if covid means I should delay or not. I also want to know how not to be ill all the time!!

On the one hand, I’m definitely immune-suppressed, on the other hand I’m not sure me (or my boss) can handle me being ill 24/7 for the foreseeable (I’m only really going to the office 2/week and wearing an Ffp3 mask on trains).

I’ve heard of people get pregnant when sick, even with covid but they weren’t people with overactive immune systems (I presume). I guess think about your personal factors age or amh /ability to tolerate another loss / feeling healthy/comfort of having full range of meds. I am now making choices based on ‘which approach is less likely to cause me regret or make me feel bad’.

Oh, and for me personally it was a clear case of I’d rather lose a month of trying than my eyesight or my lung health.

Thanks both, I'm going to give the Pred a miss but start the cyclogest tomorrow. I don't know whether to take it as a semi-good sign that my immune system has finally dropped or that this virus will in fact over activate it. Good shout re Hydroxy - I think I'll drop that for a few days too and see if it helps me recover. I guess I just have to let this cycle go. It will just be my luck however that this is the cycle that I finally get preggo when I can't take all the meds! But I feel so unwell I really don't have a choice as I agree, my health has to come first. Thanks for your replies xx

Hi all I hope you don't mind me jumping in. I'm on immune protocol with dr Shehata, but was due to have FET locally in the next week. I've just had my pre-FET scan and they think there's either a cyst or might have ovulated, so have cancelled the cycle. Has anyone experienced this?

When they booked in my scan, I said I ovulate early yet they still gave me a late scan / because they only scan on Tuesdays and Thursdays?! Yet now I will have to pay cancellation fees for this cycle. I'm going to challenge this - has anyone had any luck in doing this? They can't even get me a follow up consultation til next month - which delays us so far. I've paid separately for immune protocol to work alongside this cycle and will have to fork out again for all this additional treatment. Im utterly devastated and cannot understand how the cost of this should fall on me. Any helps or advice much appreciated x

@HopefulH that sounds like a sensible plan and you're right, if your immune system is low anyway, it should have less of an impact on potential pregnancy I'm sure. Fingers crossed for you x

Welcome to the chat @MotherOfShihTzus . Sorry to hear about your frustration with the clinic, unfortunately I've no direct experience of trying to request a refund or make a cancellation so I'm not sure I can advise, but they do sound rather strict and often unfair in that regard. I hope they can see sense and you can get somewhere with it all.

Does anybody know if realistically one can have EWCM for up to 6-7 days in the run up to ovulation? Everywhere seems to suggest it should be 3 days max and if it's longer it would indicate an issue like POCS. I looked back through my cycle tracking history and it seems since I've been noting it down, I max have it for 4 days with one exception of 5 an done of 6, but I could have mis-read it at the time. I'm away from my dh till the Sunday and I tried my best to time this trip so I wouldn't miss ovulation although I know it's impossible to predict for sure two cycles ahead especially. Anyway, based on my usual patterns I'd expected to ovulate Saturday or Sunday, but I started with the EWCM yesterday so worried I'm going to over the next couple of days instead and miss the timed intercourse this month. No LH surge so far ok OPK sticks and BBT was quite low for 3 days, but today it's slightly higher so I don't expect to before Thursday/Friday. I was just hoping I could hold off till Sunday :(. Ay idea if that's possible based on EWCM?

@MotherOfShihTzus welcome! That sounds extremely frustrating, I'm really sorry. I'm afraid I don't have any experience with that but agree it's not fair you have to pay when it seems the clinic have messed this up. I'm confused about how they can't tell you for sure if you ovulated too - they should be able to clearly see the corpus luteum in your ovary if so. As if you didn't, you could potentially try naturally to catch ovulation?

@clhiu I haven't had EWCM 7 or 6 days straight in a row before ovulation, but I have had it for the odd day or so maybe 8 days before and then it dries up for a few days. But I have PCOS so I think my body starts to gear up to ovulate and then doesn't. I really hope your body holds off in time for you to reunite with your DH! I know how frustrating this must be - being apart can be stressful for this reason when TTC. I once travelled to my partner's work conference hotel so we didn't miss it, and then didn't get pregnant that month!

I'm actually in a similar boat where I think I may ovulate this month a couple of days before my intralipids, and don't think I can go any sooner because of work commitments. Does anyone know if it's pointless to have intralipids on the day of or after ovulation? I will email CRP asking this too.

Another question: I just got some blood test results back to send to my IVF clinic. My prolactin is high (653 and 109-557 is the reference limit) and this is the fourth time it's come back high like this. Does anyone know if this is something that should be treated? A previous doctor told me it's a sign of PCOS and not overly high so wouldn't be worried, but it seems to be linked to miscarriages from a google search.

Love to all x

Hi @MotherOfShihTzus I'm really sorry to hear that. I had 3 cancelled cycles last year and they totally suck 😰 I'd done all my immunes the first time and it cost a fortune, plus then the cancellation fees. So after that I waited until my transfer date was confirmed to book intralipids to keep the costs manageable. Are you doing a totally natural cycle? It seems odd to not scan more often than twice a week. Definitely challenge them on it. I'm sorry, I hope you can get your consult in sooner and get started again.

Hope you're feeling a bit better @HopefulH that's so frustrating for you to be ill at the crucial time. Fingers crossed for you.

Nice to hear from you @clhiu I thought around 5 days ewcm was what to look out for, I rarely get it for more than a couple. I wouldn't necessarily think it was bad, but might make it harder to track ovulation maybe. Fingers crossed you don't ovulate early and you can try this cycle. I'm still temping and last month I had a huge temp spike so I thought I'd ovulated early but it dropped the next day and them was a gradual increase over a few days.

Hi @Lily1990 I'm not sure about either of your questions, sorry! Did crp come back to you on intralipids? I'm going to guess they said yes to them but I'd maybe be inclined to give them a miss if you've already ovulated. Hopefully your ivf clinic will have some insight into the prolactin.

Been in ivf admin hell today, number crunching and going back and forward. Had our nurse consult and were clear to start. I'm waiting for them to send our consents. I need to pay tonight and the costs just keep adding up 🤑🤑 I really hope we get some embryos out of all of this 🙏

Hope everyone is doing ok xx

Thank you @Lily1990 . I’ve been very good at making sure DH and I would always be together at ovulation for quite a long time, but that’s just another of those things that’s stopping me for making plans and living my life as I want to so this time I took the risk, I tried timing it as best as I could and it would have worked if I hadn’t ovulated early. Trying not to beat myself up about it too much, telling myself it’s just one month, but you know what it’s like and I cannot stop stressing a beating myself up about it now!

Hello @VenusStarr 😊. I had a really obvious positive LH test this morning so I think I’m almost certainly out, trying to stop myself from obsessively thinking about it as there’s absolutely nothing I can do anyway 🙃.
oh, the signing of the paperwork stage! when the real cost of everything becomes gradually clear, fun times! You must be feeling good that you’re starting soon though, I wish I could afford more ivf. I hope this stressful stage is over soon. x

Ah, that's a shame about ovulation @clhiu I guess like you say, you can stop thinking about it, but I'm sorry you've missed trying this month.

I've just paid a massive chunk, feel sick 🤢 we've had to take a loan to cover it, we could've waited and saved up but I'm bored of waiting now and just want to get going, especially as we're still a way off a transfer. Can't remember if I've said but our doctor wants me to take a month off between cycles, which I am glad about to give me time to recover. I think I do respond better if I'm not going back to back. It gives me time to save for my transfer and immune meds. Everything does seem to have increased in prove though. Makes it really hard to plan! X

Hello, hope everyone is doing ok ❤️

@MotherOfShihTzus sorry to hear about your experience, that’s frustrating. Don’t have any advice to give I’m afraid but I would definitely challenge them and the process.

@Lily1990 I would agree with @VenusStarr on this one, I’d give the intralipids a miss too if it’s a challenge to get an appointment within the recommended timeframe.

I had my follow up with Dr S today. He feels because my TNF alpha markers were high in the first place that I should really be on Humira to increase success, I avoided them because I have latent TB and a major side effect from Humira is reactivating latent TB. So his suggestion was to take Humira and latent TB treatment (strong antibiotics for 3 months) at the same time. Feels like a lot of medication and time wasted, but I could be arguably wasting time now by avoiding this route and going through repeated failed cycles.

My biggest worry is all this medication with serious side effects. I asked him to repeat my TNF alpha test before we make any decisions.

Thoughts anyone? It’s really hard :( ❤️ and also if anyone has success stories using Humira, this may encourage me to rethink…

@VenusStarr ahh IVF admin and finance hell - I know it all too well! I’m glad you’re nearly there though. Hopefully you can relax before you begin to take your mind off things. Fingers crossed you get the result you’re hoping for xxx