Immune/NK cells - pred thread 28

[myrainbowjourney]

Hi Ladies

New thread 🥰

If you comment to hold your place. I'll try and tag as many as I can xxx

Hi @InvisibleDreamer I'm so sorry to hear of what you've been through. No-one should have to lose a baby, let alone someone for whom the pregnancy did not come easily.

A close friend who's recently had IVF had the same advice about steroids, it sounds like some doctors just don't like them. Following what the doctors told you was the right thing at the time, and you have to make the best decision you can with the information you have so don't beat yourself up.

Let us know what the EPU say, I had the same thing after my last one and I have some good advice if you have retained tissue (I wish someone had told me what I now know). But hopefully you don't and it's just taking a while for your hormone levels to drop.

Xx

Hi everyone, hope you don’t mind me joining also just a heads up for an mega long post…

Our journey started nearly 10 years ago. I’m 32, AMH 19, myself and my partner have no health problems, don’t smoke and don’t drink. I’ve had 14 losses in total all ranging from 4-6 weeks. 2 ectopics - one ruptured resulting in loss of tube. Started IVF - another early loss.

I’ve had every investigation going. NHS & private. Had biopsy for NK, karotyping, APS, thyroid etc. Nothing has came back with any cause for all of our losses.

I’ve been researching immune issues because everytime I fall pregnant (naturally & with IVF) I feel unwell, sore throat, feverish, loose bowels, major bloating. I just feel like there could be something that’s being missed.

So I found Dr S cited in many places. I just don’t know if my NHS IVF clinic will let me go ahead with private investigations and potential treatment at the same time. I know Dr S prices are 3K up for initial testing. Or if I should ask my IVF clinic to prescribe pred for me to try & potentially extra progesterone (I’ve never had my progesterone checked in pregnancy!! - I know I should have pushed for this).

Anyway, I suppose I’m just looking for some guidance? Believe it or not I’ve read through every message from all the old threads & feel like you all could have doctorates in fertility and reproduction haha!

Any advice at all would be met with open arms

Hi @LuckyNo14 I am so sorry for your losses ❤️ its absolutely heartbreaking.

With the nk cells testing, what did you do, biopsy or bood tests? I've done both, the biopsy was ok but my bloods showed very overactive in pregnancy.

How is your thyroid, including thyroid antibodies? My vitamin D was very low too, so worth looking at that.

I'm doing ivf too now. I had my first round in May and I'd done the tests with Dr S before starting and my clinic were open to my treatment plan, although my ivf doctor doesn't think I need hydroxychloroquine and intralipids, he wanted just prednisolone.

What have you tried - clexane, aspirin?

Have you had any of your babies tested? Our 4th was tested and he was chromosomally normal, so that's when we saw Dr S. I had a chemical after my fresh ivf cycle, so I did the Endometrio tests, looking for infection and inflammation (chronic endomitritis) but everything was clear, including my implantation window. We don't know why the chemical happened, but Dr S thinks my immune stuff was under control, so possibly it was the embryo.

The other thing my ivf clinic have suggested is pgt-a testing on the embryos, but we've only got 2 frosties, so not testing them. Dr S believes that chromosomal issues are statistically very unlikely in recurrent losses - have you both had parental karyotyping? We did and again all clear. We might embryo banking as I have low amh and we might revisit testing embryos, but I'm not just unsure whether to go down that route.

Has your partner had sperm dna fragmentation? We've not done that yet, I'm convinced it's all me to be honest. But if you've had no answers with other things might be worth looking into.

This group is very knowledgable and supportive, so keep chatting to us ❤️ xx

Sorry, just reread and saw you have done karyotyping and thyroid - what us your Thyroid? Mine was only slightly over at 3.6 but it used to fluctuate, so I'm on a low dose of levothyroxine x

@VenusStarr thank you so much for replying.

I’ve just had the biopsy, so think the blood test will be worth looking into. Do they need to be done when pregnant? Surely that’s when the test will be most accurate? I don’t actually think I’ve had vitamin D checked. I’ve always been told my thyroid tests have been normal - never been told numbers - think I maybe should have been a bit more proactive and asked.

I’ve tried aspirin, never clexane. My GP is very unhelpful due to her lack of knowledge on the issue. Never had any babies tested. Always passed at home, except for the last ectopic.

My last round we had 5 fertilise. 1 graded good which was put in & the other ones didn’t last for freezing.

We’ve both had karyotyping but he hasn’t had dna frag on his sperm. I’ll ask about that at my review. Or even if I can have these things done privately while I start stimming.

It’s honestly been so frustrating I almost wish there was an issue to treat. Just to have our baby. Trying not to lose hope but I think I might only have the smallest of glimmers left xx

The tests that Dr Shehata does, he puts your blood into a pregnancy state and sees how it reacts. My nk cell level is normal but when in the pregnancy state they are highly activated, so Dr S thinks that my body essentially attacks the pregnancy.

There is a blood test called TEG (not sure what it stands for) but it looks at blood clotting during pregnancy, as far as I'm aware only St Mary's Tommy's does it - I was under Tommy's and they said I couldn't have it done. Dr S doesn't do it either.

It's overwhelming - I don't know my recurrent miscarriage blood results (lupus anticoagulant, antiphospholipid syndrome results etc), just that they were normal, you just trust them but as time has gone on, I've kept records of evetything.

It's worth getting your thyroid and vitamin D checked. I've been on 4000iu since November last year and it's only increased from 51 to 89 so I do wonder if I have an absorption issue.

When is your review? Have you never tried clexane in your ivf cycles? My clinic would do that as standard as I've had recurrent losses. It's strange how everyone does things differently, it's unhelpful.

I'm having a FET next month, got my nurse consultation this week to order my meds xx

That sounds good. I’m not sure when I’ll get my review. My current loss has just happened/happening now. But I’ll definitely ask about vitamin D, thyroid numbers & what/if they can give me extra. I don’t feel like they have done anything that I wasn’t able to do naturally on my own. I took Cyclogest in previous losses. I’m more than happy to pay for things privately just not sure if they’ll agree or it will lose me my funded rounds but I feel like I need to ask. Thank you so much for all the info, it’s very much appreciated ❤️

@VenusStarr do you have much calcium in your diet. I think this can help the absorption of vit d.

@InvisibleDreamer I've sent you a PM x

Hi @Daffodil21 hope you're getting on OK. I cut down on drinking milk as I read that it can be inflammatory but I do have calcium in my diet. I've recently started back on probiotic drinks again.

I'm so sorry you're going through a loss right now @LuckyNo14 ❤️ I hope you're not waiting too long for your review. Xx

@LuckyNo14 I'm sorry to hear you've had such a long and hard journey.

I've only had tests with dr S but they showed my nk cells were normal in number, but overactive so attack the embryo as soon as im pregnant. I am not sure how the biopsy tests work but I seem to remember reading they only test to check whether the number of cells is too high, as opposed to their activity levels? I could be wrong though!

Quite a few people seem to manage to successfully combine seeing him with ivf at other clinics so I hope you can find a way too. X

@treesall thank you for the reply ❤️

I know this is a thread about Dr S… however, I’ve seen on the RI Facebook group people talk about Dr Gorgy, anyone any experience with him? I’ve seen prof Quenby & Brosens I loved them but they don’t offer much more than the biopsy. He asked me to trial sitagliptain but I’m not sure really if that would help. I feel at 14 losses I don’t want to keep doing things blindly.

It’s so frustrating that in this day in age when we all pay towards our NHS that we’re having to go elsewhere and pay for private investigations. It’s also even more frustrating because I work for the NHS, they’ve got my heart, soul and money 😂

Hope you’re all well ❤️

Thank you @VenusStarr - love the name! Hope you’re well xx

Hi Everyone

I'm new here. Quick backstory - never pregnant, three failed rounds of IVF (good blasts, not PGS tested) and referred to Coventry for NK cell testing & they found my count was too low (less than 1%). Has anyone had any experience of this? [I'm still waiting on results from second biopsy before I can chat to doctors]. All the academic papers mention a subgroup of infertile ladies with super low NK cells, but no one mentions any treatments or seems to discuss it on forums.

Anyone have any experience?

xxx

Hi everyone,

I've just had my result from Coventry come through as well and it would be good to get peoples take on it.

I am 36 and DH 38, I have never had a BFP, after 12 months of ttc we moved onto IVF. All tests looked fine except a thin lining. I had a great result from the egg collection, with 9 high quality blasts. After 2 unsuccessful transfers I had:

Pgt-A of my embryos - 83% euploid

Recurrent implantation blood tests, autoantibodies were negative, I have one abnormal PA1 mutation, a MTHFR mutation and C4M2 mutation. So nothing that would explain things.

Era Emma Alice - I am pre receptive and had significant microflora issues- 0.00% lactobacillus. We thought this explained things as I had poor quality lining and after treatment that improved and it got thicker.

Hsg - normal

We then did a euploid transfer after the microflora was treated, with aspirin and heparin and with the transfer window timed, as usual it was a BFN. My specialist then recommended a hysteroscopy as my lining still looked thin towards the lower uterus.

Hysteroscopy - cervical stenosis found and treated, but I was told this wouldn't explain the lack of success. Gel was inserted as part of this and I had the Nk biopsy in the same cycle.

When I saw Prof Brosens he didn't seem to believe much about microflora as he said people with abnormal microflora still get pregnant. Although I feel in my case it explained the lining issues and my microflora was as bad as it could get.

Anyway he explained that my body is likely overselecting embryos and the biopsies would be helpful. I was expecting the result to be though the roof and I'm beyond shocked that it has come back at 3.44%, on the low end of normal. I'm hoping to repeat the biopsy in a medicated mock FET that I'm doing this cycle. I'm worried as he mentioned it tends to cycle and with my next transfer planned for November the result may be high by then?

Any advice?

As luck would have it, the moment after I pressed send on my last post, I got the second biopsy results from Coventry. My second result is very high. Like 33% high. So I've gone from less than 1% to 40% in 25 days (I have a short cycle).

@Gardenlady543 maybe this is what your he was suggesting might be the case for you too?

And if anyone has any very low to very high biopsy results, please let me know?

@BerryBright prof Brosens had made those comments prior to taking the biopsy. I am hopefully having a repeat on Monday as I'm having a mock cycle right now to repeat my ERA and EMMA, I'm glad I saw your post because when he said they can cycle I assume he meant over months so was thinking about begging my specialist to do a transfer on Monday instead of the biopsy. But clearly yours have jumped through the roof within a month, so maybe mine will too.

Have you spoken to a specialist about the results?

I have an appointment to discuss with Brosens in a couple of weeks!! I'm just impatient!

@BerryBright I was wondering what the wait time would be for a review. I'm keen to hear what he tells you.

My results came back in about 3 weeks, so hopefully if they can get the biopsy on Monday I'll know my second sample results in the next few weeks. I guess it's reassuring that I had normal results on this sample, I just expected it to provide some answers for why I never implant, and it hasn't.

@BerryBright & @Gardenlady543 Hi ❤️ I had the same biopsy, only went for one though. My result was low also 0.3% I have since spoken to Prof Brosens (on a few occasions) and he’s never been concerned about this result. He did say that it can change month to month. Treatment for high NK cells is pred I’m sure

@LuckyNo14 How come you only had one? It hurt sooo much! I wish I’d just had one. Xxx

I just typed out a massive response and lost it 🤦🏻‍♀️ 👋 @Gardenlady543 (hope you got on OK today?) @BerryBright

To summarise if you have 2 low readings on the biopsy, Professor Brosens would prescribe sitagliptin for 3 months. I had one normal (4+) and one low (0.71). He thinks my low was a fluke and I'll need a third biopsy. I've not pursued this yet. I did a mock cycle last month for the era, emma and alice tests and all was OK. I think my fresh ivf chemical pregnancy was implantation issues and I'd only had 108 hours of progesterone and I need 120 hours. If my next cycle fails, I might go back to Brosens - I'm pretty sick of invasive procedures at the moment - I did debate doing it this cycle before my FET, but decided to take the month off tracking everything.
Plus Dr Shehata has me on an immune protocol for overactive nk cells anyway - I have wondered if the hydroxychloroquine affected my biopsy results 🤷🏻‍♀️ bit of a minefield. You've made me feel better about my low result @LuckyNo14

Hope everyone is OK. Got my nurse consultation for my FET tomorrow, kept panicking today that I'd missed it. Can already feel my anxiety increasing and I'm a few weeks away yet

Thanks @VenusStarr what does the sitagliptin do? I don't think I fall in the low range even though I'm right on the cusp. It will be interesting to see what my repeat biopsy shows.

I'm not 100% on sitagliptin, but it's a diabetes drug and if you need it you have to get it on a private prescription (I think if your nk cells are high, he'll write to your GP to prescribe).

Hopefully your next biopsy results won't take too long. Will be interesting to see what they are and what he recommends x

@Gardenlady543 forgot to tag you