Immune/NK cells - pred thread 29

[StillTrying10000]

Starting a new thread as the last was full.

Hello. So glad I came across this thread! I’m currently with Dr S after 4 early miscarriages and diagnosed with high NK cells. Still getting my head around it all and reading back on your thread is so helpful! Hope you don’t mind me joining :) We’re currently trying to decide whether my partner should get the sperm test. The first time we met Dr S we asked him about it and his response was to give us a leaflet where all the outcomes would be the same supplement so we didn’t think it was worth paying for but perhaps we should go for it. Will listen to the podcast as well!

@89Hope @MyEasterEggs thank you for the feedback on the test. I think we will go for it. My thoughts were also around the cost of the 'lifestyle' consultations and feel like it could end up being endless. He is taking the supplement they recommend already. But I think you're right and we should just tick the box and find out. Like I said, it will depend when my ovulation falls for this current cycle.

Interesting that your OH treatment was antibiotics @89Hope, did he have to do anything else?

@89Hope I am happy with a WhatsApp group, or Facebook. Whatever everyone prefers.

@Tgrf55 I have friends who recently had a successful first IVF cycle so I'll definitely speak to them. I've also just done research and heard good things about clinics from various people. I actually had a virtual open day appointment with the Evewell, which is where @MyEasterEggs is. I felt like they were great, but they are also on the expensive side! Unless I'm being naive and it's just normal?

@MyEasterEggs did your dna frag come up with anything, and if so what was the treatment?
As I said above, I had the online thing with the Evewell and they mentioned that testing on the embryos. I think I'd be tempted to do it if the option is there.

When I spoke to them, they knew I was having immune treatment elsewhere. I asked the question and they said they did it, but they might not have as extensive a testing/treatment option as Dr S. They said they were happy to have me have his treatment alongside them if I went with them.

@PennySas welcome! And sorry to hear of your journey to this point. It really is rubbish!
I agree with what you said about the leaflet and it was all the same treatment. That's why we got OH on it anyway. But I am worried of the impact of they want all the other consultations for him. But then I guess if he needs it then he needs it. Problem is he won't listen to me, so if he needs to change anything it's best to come from someone else. It's do difficult knowing what's best. That's why I wish they said you need X Y Z and you have no choice.
Where are you with your testing/treatment? Have you started yet?

@PennySas welcome! I’m a recent joiner too after a long break from TTC after multiple losses.

Quick note on the tests for male partners for you and @myrainbowjourney…it’s important to know that supplements won’t fix an infection, and an infection can cause high DNA fragmentation, so I think a urine culture can be helpful to have with the SpermComet test. These can be done at The Doctor’s Laboratory with a doctor’s referral, or alternatively Jonathan Ramsay is a urologist who can run these tests and also check for a varicocele. Does Dr S check for that?

The only reason I’m mentioning all of this is because it took me bloody years to find out it was important and relevant to us. My partner had a hidden infection and this was a cause of his high DNA fragmentation. He’s also been on a special diet and supplements for the last few months to improve sperm health. So it was worth it for us before starting IVF. I just couldn’t have into it - and shelled out for it because it is expensive - without knowing we’d covered any male factor issues. These can often be the least expensive and simplest of all things to treat. Hope this helps xx

@myrainbowjourney not naive at all. The Evewell are probably one of the priciest clinics (if not THE most) and we’re not feeling especially comfortable about the spend. We sold our home to help make this happen. And I also weighed up their record for patient care and team experience - they’ve recruited some of the best - and we both had a good feeling about them. We were seen and heard.

I meant to say above that my OHs treatment was antibiotics. Also Symprove for three months which is good for us too. He had quite a complex supplement protocol which I can share?

Thanks for sharing about the immune treatment as I don’t think they do nearly the same level of investigation so I’ll raise this xx

I’m arranging my appointment with Dr Shehata and I wonder, will he do the whole battery of tests he offers if I’ve already had the Chicago tests? Or does he just offer some of them initially? How long does it take for results to come back? I might have more questions, sorry, just trying to figure out next steps and want to try and see him when I’m next in London. Thanks xx

@tgr
Thats good you had a scan recently. Fingers crossed all is well and it's just an anomaly.

@myeast
Dont be hard on yourself, it's such a "wobbly" time having to go through all this. It's so shit. Especially with your house situation, you really deserve some good luck soon. Good to know the second IVF podcast is good. My oh had had enough by that point so I will listen to it myself another day. He took it quite hard when he got the results.

@penn
Sorry you find yourself here. There is a good podcast about the sperm test and causes of frag which might be worth a listen to if you are thinking about it. I found it much easier to listen to than reading through a bunch of medical jargon on the Internet!!
podcasts.apple.com/gb/podcast/prof-sheena-lewis-male-infertility-and-sperm-dna/id1613615538?i=1000554696236

@myrainbow
The main treatment was antibiotics but there were various other recommendations on lifestyle. They also checked for the varicous vein issue, which again men could have and not realise.

Good you know people who have been through IVF. I don't know anyone so not sure where to turn!

If you email the crp clinic they can email you their IVF price list - partnering with Kings) then you could compare. I'd be interested to know the differences.

Dm me your number, I've been sent a another number directly from a regular member of the group. If anyone else wants to be added for support or meet up just send me your numbers privately xx

Sorry for the shocking tagging above!!! I keep getting an error message on this stupid site when trying to tag.

I'm not loving this site update, it's taken me ages to get on and I can't scroll back to see what you all said. Feel like it's tipping me over the edge today :( ugh.

@myrainbowjourney thank you. I've just fallen off the wagon with everything. I was doing daily yoga, but not done it for over a month now. I was exercising but stopped that. Drinking more, feeling fat and horrible. I said to dh on the weekend, what if he just looks at me one day and doesn't fancy me or love me any more 😓 he was really lovely actually, but I'm struggling to not focus on the negatives.

I've still not heard back from CRP, so I'm getting anxious, am I even having the op next week?? @Hope

I'm sorry, I'm really struggling to post at the moment :( hope everyone is ok xx

@89Hope Im with CRP and go to Kings for IVF. Kings is really lovely, clean, new and shinny and the staff are really nice too. If you have any specific questions let me know. I also found this website super handy theduff.co.uk
IVF itself really surprised me, it wasn’t this scary traumatic thing at all, I guess once you’ve got to this stage we’re pretty resilient but I personally got on with the drugs really well and it all happens so fast, Egg harvest on day 16 and transfer day 21. Then the 5 day wait to do that first test is torture, but again we’re used to that now aren’t we!
Good luck! x
@VenusStarr sorry to hear tou

@VenusStarr ahh this new update!!! I was going to say sorry to hear you are having a rough time. Don’t be too hard on yourself. We can’t always be watching everything we eat and do. And even when I do everything perfectly it doesn’t work anyway! I hope you get details about your appointment next week soon! They were run off their feet yesterday x

thank you @StillTrying10000 I know you're right, it is still over a week away. I think its just an indication that I am feeling anxious and its another thing I can't control. How are you? xx

Welcome @PennySas!

Thanks for all the info on sperm dna fragmentation ladies, I listened to the podcast yesterday and am planning to ask my consultant about the comet test at my next appointment. I understand it's not something you can get via the NHS but I think she runs a private clinic locally so perhaps that's an option. My partner ticks a few of the risk factors mentioned so it may be worth looking into for us. Does anyone know if high sperm dna fragmentation could be a cause of late losses as well as early losses? The podcast didn't specifically say but implied at one point that even with high dna fragmentation you could still achieve a live birth but the child is more likely to develop conditions like autism, so that makes me think it could potentially cause losses at any stage.

@MyEasterEggs I would love to see the protocol your husband followed if you're happy to share the details.

I hope the pain and heavy bleeding have settled a bit @VenusStarr. I'm not sure if it would help at all but my GP suggested a meditation type app called Insight Timer, which I had been using regularly up until recently and I found it really helpful with my anxiety after my last MC. I need to get back in the habit of using it again, I managed to today and felt the benefit so I need to make more effort to keep it up. I like that there are plenty of short meditations to chose from, so if I only have 10 minutes to spare I can still fit one in.

I had my appointment with occupational health this morning. It wasn't as awful as I'd imagined, and the nurse told me she'd had two MCs herself so understood a bit of what I am going through. She suggested a referral for counselling but I declined as I've been having it elsewhere and there's no point seeing two counsellors. She didn't really have much else to suggest which is what I expected. I think it was a bit of a box ticking exercise really, just so my employer knows they're doing all they reasonably can to support me. My employer has been good so it was probably a bit pointless but never mind. Hopefully I'll sleep better tonight as I spent far too much time worrying last night when I should have been sleeping 😬

@Sezmarelda

Supplements:
Garden of Life Once Daily Men's Microbiome
Life Extension Super Ubiquinol 100mg - 1 at breakfast
Punalpin Plus - 3 at breakfast, 3 at dinner
Bare Biology Life & Soul Omega 3 - 1 at breakfast, 1 at dinner
Solgar Vitamin D3 (worth getting tested before supplementation)

On empty stomach:
Biotics Research L-Carnitine Powder - 1/3 teaspoon mixed in water
SolgarAcetyl L-Carnitine - 1 a day
Impryl - 1 a day

He also had a tsp of tomato purée Rach day

@Sezmarelda loving this new update 🙃

Got thrown off before I could say 1 tsp tomato purée each day for the lycopene and also a handful of almonds, hazelnuts and walnuts plus 2 brazil nuts.

Some of these recommendations were really specific to my partner so best to check xx

Thanks @MyEasterEggs, I will look up all the bits I'm not familiar with to see if I think they're worth my OH trying.

This new update is so annoying. I got kicked off part way through typing my message yesterday evening and almost had to start again 🙄managed to quickly bypass the error and copy the text but it was definitely an arghhh moment!

Yeah that’s exactly what happened last night @Sezmarelda I tried to correct a typo then Mumsnet decided I was logged out so I just hit post 😅 I think it looks a lot better (I’m a graphic designer so I’ve always hated the interface) but there are so many bugs it’s unreal! Hopefully it’ll be simpler to use soon!

@VenusStarr did you ever get confirmation of your appointment next week. I'm day 26 of what feels like the longest cycle of my life (usually 24 days max) desperately waiting for my period to kick into gear. I've been spotting since the weekend! Eh. Good news is Tacrolimus levels are still at the correct place so I can go ahead with my FET in a couple of weeks x

@StillTrying10000 they've just emailed to cancel 😢😢 said they can't get an anesthetist. I don't even know what to say.
I hope your period isn't too delayed and you're on track for your FET. Xx

@VenusStarr oww no that's so awful, especially when it's been planned for so long! Have they suggested another date? Would you consider doing it without anaesthetist? I had mine without and it was painless but then I just had the camera, they didn't need to do any procedures to remove any tissue with me?

I don't think they'll do a treatment one without sedation @StillTrying10000 and I'm not sure I'd cope with it. I really struggled with the Endometrio biopsy last year.
No idea when it'll be rescheduled. My cycles are short, so unless they can get me in the following week, I'll be waiting a month x

@MyEasterEggs @89Hope thank you for the info on the dna frag. We will definitely do it, just tricky on the timing. I had some fairly dark OPKs in recent days but not peak. Now they have got lighter. Hopefully I'll get something obvious soon. But I can't book it if it falls in fertile week as there'll be no abstaining!

What's the next step for you? When does the testing come back?

Re the tests, I think he will take into consideration any you've had done. But perhaps with the nk cells he might want to do his own. I'm not sure. My follow up consult was 2 weeks after the first so it doesn't take long.

@VenusStarr don't feel bad about falling out of the routine. It's such a rough journey, trying to be perfect with diet and lifestyle is really hard on top of that. And it definitely becomes less appealing when you feel no further forward. Allow yourself some downtime, so that when you want to get back to it, you'll feel ready.
Know also you're not alone. I started with good intentions and now I am struggling to not eat rubbish every day and I feel like the weight is piling on.

It's so annoying you haven't heard. Hoping you have by now?

@Sezmarelda I'm glad your session wasn't as bad as you thought. It sounds like your employer are really supportive which is great. I really need to try some meditation or something like that. I've been meaning to but I'm terrible at putting the time aside.

@StillTrying10000 exciting re your transfer. Keeping everything crossed for you.

@Tgrf55 AF arrived yet?

Not sure why, but I can't see this thread on my 'watching' section any more. It's so annoying!

I also had to log in to the website to post this as I have been trying on the app since yesterday 😭

@VenusStarr that is so rubbish about your appointment. Is there anywhere else you could have it? I would cause a bit of fuss about that, because it's totally unfair to keep you waiting like that, and then tell you so last minute!

😢😢 @myrainbowjourney i've rang round a couple of places. Once said they charge £5-7000, the other one said they don't know the cost, it's set by the consultant when he's seen me - both of those were A-listers who deal with Asherman's. I'm really conscious that it needs to be done with the right tools as some use heat and it can make it worse. I don't think they'd get me in any quicker. Although, crp haven't replied.

I keep having thoughts that this is the end. I'm trying to not panic and catastrophise, but it just feels like I'm getting nowhere. X

@myrainbowjourney I don’t think abstinence is any more than 24-36 hours so it could still work for you. But appreciate you might want to hold off until after 2ww.

Next step for me is hysteroscopy with endometrio during a mock cycle (they monitor me days 12-19 to try and replicate FET I think) as well as immune testing. Was due to do it all in two weeks or so but as we won’t have our PGT-A results until then (and I’m overwhelmed) I’ve decided to wait another cycle. There was some relief in making that decision as I was beginning to sense that white knuckle desperation creeping in. I feel like I’m in the 2ww myself waiting to find out if there’s at least one healthy embryo! Good news is we had seven biopsied in the end of varying grades. One excellent, five good and one average. But I’ve no idea what this means in reality as a 4AA embryo can be abnormal and a 4CC can become a healthy baby!

I’ve asked my consultant to review what Mr S offers so we can chat about it at our follow up. I want him to be actively involved in the decision so I still feel supported. I’m not sure how I feel about the Chicago tests now I’ve heard Mr S thoughts on them.

@VenusStarr that truly sucks. It sounds like they’ve really messed you about. I wonder if you can give yourself the rest of this cycle to feel everything you need to feel and then try and see next cycle as a fresh start?

I’m slowly coming down from the highs and lows of that first round of treatment. The UTI I caught around the time of EC seems to be lingering and I just feel so achy and yucky. Sent a urine sample off today. Think I must be due my period about now too as it’s been 8 days since EC so no doubt that’s affecting how I’m feeling. It comes a bit earlier, right?

I’ve still not got back on my nutritional and supplement plan. Had a weekend blowout but it’s never really ended so I’m giving myself space to enjoy what I want and get back on it next cycle. No point in trying to stick to a plan when I’m hangry xx