Immune/NK cells pred thread #31

Hi @VenusStarr pleased to hear that your AFC was a good number. Sounds like you've got a good plan ahead. I really hope it's successful.

I'm okay thank you we had a positive scan after a long week waiting with baby grown and strong heartbeat. Just waiting now for another 2 weeks.

Can I ask people who are or have been pregnant before with the steroids treatment immunosuppressive. Did you sort of shield/mix less. I'm feeling quite anxious and thinking of just trying to reduce down what I do with work and mixing too much but not sure if I am overthinking it all. The clinic have said not to have my COVID or flu jab either. My job involves visiting different schools and mixing with different children all the time. My boss is going to support me with whatever I want to do. Thank you

Totally understand the ‘knowing we did everything we could approach’ @VenusStarr I feel a bit like if I go to a new clinic I will throw the kitchen sink at it knowing I tried my hardest but if it doesn’t work I’m not sure I could handle any more IVF. We shall see. It’s never black and white is it.
wishing you all the best with your upcoming treatment and keep us posted on how it goes.

I'm good over here. Thanks for the nudge @VenusStarr .

I'm 17 weeks tomorrow and cooking well apparently. I don't feel great posting positive news when I know how much people are struggling. But I also know people find it helpful. I'm due to be 'discharged' from CRP soon. Dr Edge is blooming lovely. The last few scans I have shit a brick before going in. I keep fearing the worst. I know I'm very lucky to be in the position I'm in. But it's also tough going mentally at the mo as this is the same period we had our first loss in.

Wishing everyone some good luck in tests and scans. Xx

@VenusStarr thanks for the update. Think we may have crossed paths or just missed each other today. It is good that Dr edge feels optimistic and it must be so hard but sounds like you have a good plan.

I had a scan with today with mixed news. There is a heartbeat but baby is measuring small for my dates however I do have a tilted uterus so Dr edge said it was hard to get a clear image. Just trying to stay positive that a heartbeat is a good sign and hope that baby isn't slow growing just too far away to see clearly.

Also I know majority of people on this thread are under CRP but I have actually never had a consultation with them. I worry that due to my low reserve I should focus on IVF as that’s most likely to get me lots of eggs fairly quickly rather than doing a CRP type protocol but I could be wrong!

Thanks for the nudge on the updates @VenusStarr. like @star2022 i haven’t been on here much lately.

@VenusStarrsounds like you’ve got a good plan together. I will be keeping everything crossed for you.

@star2022 sounds likely a good holiday. It’s nice to remember who you are outside of TTC!

We went to the Lakes in September and ate and drank and hiked and it was so good. I’ve then been super busy with work which has been a good distraction but maybe a bit too much!

I had an appointment with the NHS recurrent miscarriage clinic which was as useful as a chocolate teapot. They are doing a few blood tests but the consultant said he couldn’t offer much more beyond the extensive tests we have had and told us to go back to our GP for more IVF even though I told him I never qualified for nhs IVF due to low AmH plus you can’t have nhs IVF after private IVF so I feel like he didn’t even know the criteria. Anyway the blood tests are for clotting/vitamin D levels/thyroid etc next week. I’ve already had those so I would be surprised if anything came of that.

I also had a follow up at the Lister who recommend DNA sperm Frag and either Karotyping tests or straight to IVF again but with PGT testing. Freezing the normal embryos then running more tests on me for immunes etc before they are transferred (if we get any normal ones).

We are getting another opinion from another clinic end of the month then will make some decisions.

I find it tough as feel so done with IVF after 4 attempts and 3 losses but I also want children so feel like I can’t give up.

Sending well wishes to everyone on here.

Hi @VenusStarr Sorry I've not been on the forums for a while, we had alot going on in Sept, especially after completing our 6th and final SO cycle with CRP which again failed. Just felt like a massive waste of time for us and so frustrating having put my body through all that and not to mention the money spent. We then decided to spontaneously book a holiday to literally fly out the following day and ended up in the Caribbean for 2 weeks which was well needed. Had alcohol after so long and just ate what I wanted and we realised how much we put our life on hold these 4 years and it felt nice to just accept that our journey with SO and crp was done with.

We tried naturally whilst abroad, wasn't tracking my cycle and when I came back, I had some spotting. Would have been around 10dpo and cycle day 19 according to my app, so of course I get excited thinking it was implantation. It was like a light period with cramps, took tests all bfn, got my GP to do a hcg test and progesterone which came back at 0.6 so its been a mindfu*k not really knowing what this bleed was. I thought to myself, how cruel for this to happen after everything! I don't know if it was a combination of stopping meds and steroids, to jet lag and stress with travel/time zones and maybe i just didn't ovulate?! SO frustrating if that was the case as we literally had sex every day there, its amazing what you can do when you have no pressure of the timed intercourse 😂 But since the bleed I've been opk testing again and had a peak 2days ago so I'm hoping my cycle has now reset.

We've chosen to just try naturally now for a bit until my body gets back to normal and if necessary we will do ivf next year, although dh doesn't want me to do it. It's just so shit isn't it, sorry you're feeling deflated too. It's good you have all these scans/apt booked in as now you can just focus on yourself for a bit before doing ivf again and you have a nice break before it. I'm sorry you're having to go back to ivf again, i can only imagine what that feels like, I felt like i closed that chapter last year after my 4 rounds, but it looks as though I might have to open that again and its just a shitty feeling. I really hope this works for you, you've been through so much, keep us updated with your scans and dh results, got my fingers crossed for you xx

Hi all, I'm sorry to hear about the frustrating journeys many of you have been on. Sending you all love I have tried to not be on here too much as becoming obsessive and making this time until first scan so long. Can I ask if anyone knows whether Dr S suggests no sex after you've tested positive or if it's still ok? Will call clinic tomorrow but just wondering. Thank you all for sharing your journeys it is somewhat comforting although I hate that fact so many if us going through this. Xx

Hi all, I've been trying to reduce my time on MN and it became a little too obsessive and was making me feel worse rather than helping so a bit behind on things and apologies if I haven't responded to any messages for a while.

@Lily1990 I'm really sorry to hear the retained tissue's going to delay TTC for you, it's super frustrating when all you want to do is get back on it as soon as possible. Sounds positive at least that it should clear without surgery so fingers crossed for you that you're over this stage soon.

@HopefulH I feel your frustration so much! A year is a long time to be on a treatment that's supposed to help you getting pregnant faster and you haven't been getting pregnant at all. All these meds and clinic visits are expensive for it to just end up in BFN every time. Have you been doing superovulation back to back for a year or just immunes? But yeah, after 3 months of nothing, despite responding well to Letrozole, texbook timed intercourse and even hyfosy with my last cycle and nothing by BFNs, I decided something about that protocol must stop me from getting pregnant. I wish there was an easy answer as I know the immunes are supposed to help and maybe it's more just the SO, but the reality is for me it was too much money to keep throwing at things. Also the pred is messing with my body and cycle even taking it for just 10 days at the time. So whether I cannot get pregnant because of the immunes, SO or something completely different, the point is if I can't get pregnant then there's no point in keep wasting money from me. If it happens it happens and when it does, I will contact CRP for more pred and pregnancy intralipids, but I can't afford all this pre-conception stuff for nothing.
I hope you can make a plan for what to do next and find serenity and confidence in that whatever it is, it's the right thing for you.

@VenusStarr thanks for checking in. I strangely feel a lot better and 'lighter' since I decided to ditch any pre-conception treatment whatsoever (well, still taking supplements and low dose aspirin, but that's it). I'm not even planning to take Cyclogest or Pred unless I get a PPT, which I may never do anymore, but a lot of the pressure and costs are removed from doing that. The reality is that pregnancy happened for me before without Pred or Cyclogest and without intralipids and it may be true that for them to be effective, those things have to be started before implantation, but it's a risk I'm willing to take. A part from the stress this removes, continues issues with my husband employment over the past year means we've ran out of money to throw at this for nothing. If it's meant to happen, it's going to have to happen naturally or will never happen again, this is where I'm at now. May feel reckless to some, but it's the most sensible thing for me. I also started running again and lost a teeny bit of weight, I don't care if running isn't great for fertility, as well as spending a lot of money, I am also very much sick and tired of holding my body hostage in a process that isn't leading anywhere anyway, I may as well try to enjoy my life a bit again.
Sorry to hear your DH sperm quality decreased since the last test and probably bears responsibility for some of the issues you've been having conceiving, but I hear male factor issues are easier to fix the female ones, especially those to do with egg quality, with the right treatment and supplements. Plus, as others have said, ICSI, IMSI and PIMSI can really get around many of the issues when the problem is morphology or motility. I hope the rest of the results you're waiting for are more positive and the clinic can give you good odds and hope. I know success stories can sometimes be more annoying than helpful, and I don't want to give false hope there, but I've a friend who struggled to conceive for 2 years solid, nothing at all so they went for IVF and his semen analysis showed he had extremely poor morphology - I don't have details or what his other parameters might have been like - but essentially they did ICSI and she was successful the first time around. I think he also made significant lifestyle changes in the meantime that must have contributed to improving his sperm because less than a year after their first baby was born she fell pregnant again without trying and totally unexpectedly and ended up having a second. So this to say, male factor issues can be fixed, sometimes just with lifestyle changes.

I hope everyone else is doig ok xx

Oops sent too early! Thank you @Newbeginnings22023 for the good wishes. Hope you all had a good weekend xx

@HopefulH I’m sorry you’re having a rough time and feeling despondent. It’s absolutely draining and understandable you’re slacking off supplements etc. I’m sorry if you have already done this but I found a Hycosy / Hyfosy helped me conceive, could be worth a shot if not? Have you been doing back to back SO or trying some cycles without? Thanks so much for the suggestion to have doxycycline, that’s super helpful and I’ll email CRP asking.

@Hopefulnumber4 congrats on your child, that’s wonderful news! I’m seeing Dr S privately I’m afraid.

@VenusStarr really sorry your DH’s results were not what you hoped for. Are there any additional supplements that will improve them? My (limited) understanding is that IVF with ICSI can be very effective when there is male factor - is this an option for you? Don’t lose hope 💗

Good to know you had antibiotics too, weird the EPU didn’t suggest that to me. I’m on CD32 and still haven’t ovulated, even though my follicle was 22mm on Wednesday at the EPU scan! It’s so annoying because although we can’t TTC this cycle, I want it to be over quickly so we can try next cycle. I’m thinking of asking CRP for the trigger but don’t expect they’ll agree unless I go to them for a scan.

@Lily1990 sorry to hear this, hope it all leaves your body with your next period xx

@HopefulH sorry about the bfn, this journey is so tough. I know having a plan helps me get through these difficult times, hope you’re thinking about next steps too and staying positive xx

@VenusStarr really sorry to hear this. Forgive me as I don’t remember all the detail, has your DH been taking supplements to improve motility etc? And if so, have they helped at all? Has he been seeing a urologist or was that unnecessary? The reason I ask is because we have MFI so I’ve been through a lot of this myself, and supplements seem to improve some of the parameters xx

@mintsugi I’m so sorry to see your news. I hope you are okay. Life is so cruel sometimes 💔. Thinking of you and hope you have lots of awesome people around you.

I’ve just finished another cycle with a BFN. It’s really getting to me now that I can’t get pregnant again. I feel a bit desperate in terms of what more I can do, and find I’m gradually slacking off on eating well, taking all the supplements etc. because I just feel a bit beaten. Everything looked perfect this month but still no joy. I really want to at least be able to try this immune protocol to see if it stops us having another loss but I’m at the point now I just don’t feel I’ll ever be pregnancy again! I’ll have been on all the immune drugs for a year in November and have nothing to show for it… I’m feeling so tired with it all. Guess I’m just really bummed out this month as I actually had some hope because my lining was good for once.

@Lily1990 I’m glad you got some answers re the spotting. It might be worth taking some doxy if you’ve had retained tissue, to make sure endometritis doesn’t become a problem. I’m sure that’s why I developed endometritis after one of my losses!

@VenusStarr Hope hubbys sperm test goes okay. When did he last have one? I’m wondering if my husband should do another one as it’s taking us so long to fall pregnant again. His last one was good but it was 18months ago now!!

Hope everyone else is doing okay?

x

Hi ladies,

Hope everyone is keeping well here, I’ve dipped in and out of this thread over the last year but I’ve been keeping up to date with all of your journeys and I’m so sorry there are so many of you experiencing rough times

You may or may not remember my post from earlier in the year, after 3 losses I fell pregnant on Dr Shehata’s protocol and all seemed to be going well until at our 20 week scan with professor Akolekar where he found a suspected heart condition. This was confirmed and I was told our baby needed open heart surgery shortly after birth. I delivered my DS on 25th May and he had open heart surgery at two weeks old, I’m pleased to say he made a full recovery and he’s now a happy and thriving 4 month old - you’d never know anything happened if it wasn’t for the scar

my reason for jumping back in is to help an old friend whose reached out to me. I’ve been very transparent about my loss & pregnancy journey on instagram and an old school friend reached out to me as she’s had several losses and doesn’t know what to do next - she’s never heard or Dr S or immunes, she can’t afford to see him privately but I mentioned you can get referred to his clinic on the NHS. I just wondered if there was anyone on here who has seen Dr S NHS team and whether they had any success & how long the referral process was? xx

Thanks @VenusStarr . I went to the EPU yesterday and had a scan and turns out my spotting was due to retained pregnancy tissue (also I had had a faint positive pregnancy tests). I was quite shocked as my loss was so early at just over 5 weeks and I'd bled for 9 days already. But seeing the tissue made it feel more real and weirdly kind of validating, like I really was pregnant, so no wonder I've been feeling so upset! Luckily they said the tissue is small enough that they don't recommend surgery and think it will come out with my next period. So I guess it makes me feel better about waiting a cycle to TTC again with the hydroxy, as I also need to in order to allow the retained tissue to come out.

@VenusStarr that is so confusing about the IVF supplements - so your clinic recommended taking l'arginine but then you read online it could be terrible for egg quality? I think you're right to stop taking it if there's any doubt, also I'm sure you're on so many other supplements that even if l'arginine had a benefit, you'd probably be covered by the others. Also if it's not recommended at CRP it can't be that essential surely? Good luck to your DH for his sperm analysis! Has it been ok in the past?

Hope everyone else is ok @comingsoon786110 how are you finding metformin? @clhiu how are you doing? @mintsugi sending love and strength xx

@VenusStarr i think they do blood tests to measure how much tacro is actually in your system. They keep telling me my levels are fluctuating but they are not adjusting my meds which is confusing me!!

@Lily1990 thanks for replying. I have heard it curbs sugar cravings and I hope thats the case for me as I snack of biscuits and sweets all day long.

Hope everyone is getting on okay ❣️

Hey @comingsoon786110 sorry to hear you’re struggling with this, so frustrating and upsetting when miscarriage and TTC is hard enough already. I’m on metformin for pcos but it hasn’t impacted my weight (although I take the slow release ones which don’t tend to lead to stomach troubles). But when I first took it I noticed I felt more satisfied after eating and didn’t crave sugar as much, so I can see how it does lead to weight loss.

@VenusStarr how are you doing?

@mintsugi thinking of you 💗

It’s 25 days since my bleeding from the latest chemical (at just over 5 weeks) started and for the last few days I’ve had brown spotting on and off. I’m definitely not pregnant again as I haven’t ovulated yet or had sex and my temp is low. But the spotting doesn’t seem right? I’m thinking of trying to get an NHS scan but the EPU wait is about 6 hours and work is really busy. Has anyone else had this after a chemical?

Also thanks again to you ladies for the reco for counselling with Petals. I had my first session with DP today and it was really good. The lady was so kind and empathic and it felt very validating. x