Immune/NK cells - pred thread 29

[StillTrying10000]

Starting a new thread as the last was full.

That's wonderful news @MyEasterEggs! Hopefully the next steps with the IVF go just as well 🙏The egg and sperm salad looks much more appealing than the name suggests 😆

I'm so pleased your procedure went well @VenusStarr , I hope it has left you feeling more positive about things.

I got a positive OPK yesterday, and a lovely clear temperature dip this morning, so I think I've probably ovulated, or it's imminent if not. Once I see my temperature rise I'll be joining you in the dreaded TWW @myrainbowjourney.

I've got an appointment at my local NHS recurrent miscarriage clinic on Tuesday and I'm hoping we'll get to discuss the results from the testing after my last MC in Feb. I don't have a lot of faith in them any more to be honest, but I'll try to go in with an open mind. It's my little boys 3rd birthday this bank holiday weekend so I'm really grateful for the distraction of preparing for that to keep my mind off the appointment!

Sending love and wishing your baby boy a happy 3rd birthday @Sezmarelda 💫

How are you marking his special day? My son’s 6th birthday is in June and it’s becoming easier to find a little joy in that month. Not a day goes by when I don’t think of him or what he’d be like now but, with time, I feel more accepting.

I also hope your visit to the clinic brings some closure. I’ve found the lack of answers so frustrating over the years and have come to expect so little from these appointments. But you never know, it could point to something.

Good luck in the TWW to you and @myrainbowjourney 🤞🏻

Evening ladies, can I ask what was it that encouraged you to go with Dr Shehata? Did any of you have Chicago tests first? I tried to ask the question on a new thread but the tumbleweed rolled by and I don’t think I’ve actually asked this here!

I’m still unsure about whether to make an appt with Dr Shehata or have testing with our clinic. The Evewell use the lab at St Peter’s to do immune tests and all they’ve said is “this gives us an understanding about the expression of NK cells cytokines and whether additional measures are needed” to support a pregnancy.

I suppose I’m wondering how this compares with Dr Shehata’s tests.

Oops! Posted too soon!

So I think my clinic must cover the equivalent of “HS5 : Test for Tumour Necrosis Factor (TNF alpha) also known as TH1/TH2 cytokines” and possibly “HS10 : This test includes the NK Cells (CD15/56 and CD69 count)” though I’m
not sure if they’ll do Antinuclear Antibodies, Gliadin Antibodies, ENA and the Thyroid Antibodies. I’ll have to ask.

I also see Dr Shehata does “HS11 : This test is a very complex test where the NK cells are put in a pregnancy like state to reflect their reaction during pregnancy and different medications are added to ascertain the treatment needed to reduce the activity level of NK cells”. This is the bit that I don’t think was covered as part of Chicago tests I had done years ago but seems to be pretty important.

Did you have any other tests with Dr Shehata?

Hi @MyEasterEggs I'd been looking into Dr Shehata for a while and one of dh's friends knows a couple who had 3 losses and went to see him and had success.
I'd read a bit about Dr Gorgy but didn't feel like I understood the tests and treatment he does (LIT / LADS etc) and it felt quite extreme and expensive. Plus I'd heard not great things about the clinic so it put me off.

@StillTrying10000 shared a good podcast episode with Dr Shehata - think it was called the Fertility Method. He explains the difference with Chicago and his tests. He doesn't slate Chicago but just says if you live in the UK they make no sense because the same needs to be as fresh as possible and by the time they get there, the sample is compromised.
I did all the immune tests he suggested, which included ana antibodies, tnf alpha, cytokines, nk cell number and activation, thyroid, amh, vitamin D and a few others that I've forgotten. My results were exceptionally high activation and low vitamin D.

It's a personal choice though xx

Thanks @VenusStarr. I tuned into that episode while going through stims. It helped me see how I might work with both Dr S and my clinic, which I didn’t think was a realistic option.

The Evewell don’t do Chicago but instead use a local lab so I think I can cross Chicago off the list now and just focus on Dr S vs St Peter’s lab and dig into what it is they both offer along with costs.

The treatment options are something else I need to explore as I liked what Dr S said about treating someone with anxiety with a different drug to steroids. The Evewell have mentioned steroid treatment as a minimum but I didn’t respond well to them when I was taking steroids for another reason.

Appreciate you taking the time to share your experience. I have this awful feeling that if I make the wrong choice about this then I’ll have another loss. The decision making is quite debilitating sometimes xx

@MyEasterEggs are you under The Evewell anyway? My ivf clinic are happy to support my protocol with Dr S, they prescribe the fragmin and steroids and I liaise with Dr S's clinic to sort my other meds. He gives you a clear protocol with the days to take / start meds etc.

I know what you mean, I've had 2 losses with Dr S and I guess some people might think why am I staying with him. But I don't want to start all over with a new doctor, plus he's trying to work out a different approach for me, so I feel that he is invested in trying to make it work. He has told us that we should have hope, it's trying to find the right combination of treatment. But you've got to feel comfortable with the approach you take xx

@VenusStarr yes I’ve just had EC with The Evewell and intend to stay with them. It feels like they’re invested in us and they seem open to me having immune testing and treatment done elsewhere if that’s what I feel comfortable with. I have the endometrio in 5-6 weeks and will have my immune bloods drawn around that time. So need to make a decision in next few weeks xx

Sorry @MyEasterEggs I should have said it was my living sons bday, not one of my MC babies. I debated whether or not to even mention his bday but he is my biggest source of hope in this RM journey and shows it is possible to have a good outcome despite all that has happened, and I hope he can give others hope too. We had some family round just to have a little celebration in the garden. It was a lovely sunny day for it.

He was conceived after two early miscarriages, on "just" aspirin from around 6 weeks. I've since had two late MC's on aspirin, and aspirin+progesterone, so I have no idea how he managed to survive - I was convinced the aspirin had helped but with two further MC's on aspirin since him it doesn't seem like it was the whole answer after all. His wasn't a straight-forward pregnancy as I developed pre-eclampsia and he had to be delivered a little early as he had inter-uterine growth restriction, but he's fighting fit now, full of energy and as bright as a button. He's my little miracle and he's definitely helped to keep me going through some really dark times x

@MyEasterEggs The pressure can be immense. It feels like we have to get everything ‘right’ doesn’t it or it won’t work out. However I am hearing more and more of people who have both live births alongside recurrent mc who have never had any fertility treatment so I think it’s hard to say if it’s the treatments that make a difference in the end. That isn’t to say I think we should stop looking for answers as a lot of the causes of mc are unknown & it could be something we do makes the difference in a particular pregnancy but I think it’s also important to remember that there are cases where nothing could change the outcome. I just wish there was knowledge about it seems crazy to me that at least 50% of time they have no idea why a loss happens.

@Sezmarelda gosh, please don’t apologise! I was wrong to assume. And your story absolutely does bring hope. I have a seven-year-old daughter who was conceived naturally and having her around really helps me hold it together. She was 18 months when we lost her baby brother at 16 weeks and has been a source of strength through our subsequent losses. I’ve always been told she’s our best guide to the future and try to hold onto that xx

@InvisibleDreamer absolutely! In my mind there’s always a question mark over the treatments and whether they could be the thing that makes a difference. But I carry on regardless.

As I’m going through secondary infertility, I’m of the mind that immunes are playing a part as I’ve also developed a chronic illness over the last few years, but I’ll just never know for sure.

A good news story though! I know someone who recently went through her third round of IVF, got one healthy embryo (most successful round) then conceived before FET. They’ve been trying for years xx

I had my telephone appointment today with the RM clinic at my local hospital. They ran some extra genetic tests on the baby but it all came back normal, so no cause for the loss was found. She also said the tests on the placenta showed no sign of an immune attack. Everything appeared completely as it should have been 😏It makes me so sad 😪The dr agreed to run some extra blood tests on me, some of them repeats, to put my mind at ease that we've covered everything possible (at least everything possible by NHS standards). She also agreed to a sperm test on my partner but I'm not 100% clear if this is just the standard sperm analysis or looking at DNA fragmentation. She was talking about the latter but I didn't think that was available on the NHS and the line wasn't great for me to push for more info. She's going to write a summary letter so it should all be in there.

I also ordered an Ava tracker which arrived today. After speaking to you about them@myrainbowjourney it made me realise that it could help with my sleep issues if I'm not having to wake up to take my BBT in the night, and prioritising better sleep can only be a good thing in terms of my fertility and my physical & mental health. It's on charge now and I'll start using it tonight. I'll probably continue using my BBT thermometer for a few days to see how the two compare then hopefully I can put the thermometer in my draw never to be needed again 🙏

@MyEasterEggs that salad actually sounds quite nice. It just needs renaming 🤣

I don't know much about the difference in the tests. As I think I mentioned, on my open day thing with Evewell, all they said is that their testing and treatment might not be as extensive as what I've had already, so they were happy for me to continue on Dr S plan. I don't know what differences there are but the pregnancy like state test is to check if you need intralipids, which I do, so I'm guessing I would need to keep with him for that anyway.

The decisions are so overwhelming and you never know if it's the right one. But I absolutely agree you need to do whatever you feel is best and which you won't question. I always find as soon as I start questioning anything then I'm best not to do it. I doubt that helps at all but I just know you'll make the right decision in the end ❤️

@Sezmarelda1 did you get your peak yet? I'm glad you got the Ava. I know it's a lot but I'm impressed with it. I haven't worn it in months because of not trying and super ov and I wore it this time. It predicted the start of my fertile window and said I'd ovulate on the Tuesday, and I did. It might just take a couple of cycles to get to know you but it's very clever.

Sorry your appointment didn't give you any answers. I imagine those kind of answers almost don't help at all. I'm glad they are doing more tests for you.

How is everyone doing? xxx

I'd say I probably ovulated on Saturday (CD14) @myrainbowjourney, I have a lovely clear BBT chart this month. Hopefully Ava can perform just as well but without the need for me to wake up in the night! Of course I'm hoping even more that I won't need Ava's help at all 😁When are you due to start testing this month? I think you're 4 days ahead of me if you ovulated on Tuesday so it can't be long now, although I know the TWW has a tendency to drag. Hopefully you're managing to stay well distracted! Fingers crossed for some good news this month 🙏

@Sezmarelda1 I am away in Cornwall so it’s nice and distracting. I was hoping I’ll test Tuesday which is when my period is due. Because I’m not on the meds yet I don’t need to test early. Although knowing me, I might test at the weekend 😂.

Definitely hoping to hear some good news this month 🤞🏼

Hi ladies can I jump in and ask your opinion please? I'm 29 with low AMH for my age (5.7 a year ago when last tested) and my OH has sperm morphology of 1%. We've had 2 cycles of icsi which resulted in 3 BFN and a early early at 4+4 weeks (all top quality embryos). I felt something more was wrong so had hysteroscopy and thrombophilia blood tests and it found raised NK cells. We transferred our final blast with 20mg pred and 20mg clexane added to the progesterone I usually take and were delighted to get a BFP but it ended in another chemical at exactly the same time as the last one so didn't really make any difference 😭 I now feel like if we do another egg collection and transfer exactly the same thing will happen again as it feels like my body is just killing the embryo. I've contacted the clinic Dr S works at to try and arrange an appointment with him but was just wondering what the costs are likely to be for the initial testing? I've seen some people are put on steroids+intralipids+hydroychloroquine by Dr S to try and control the immune system and was wondering whether any of you have been on this? And if you would be happy to share your experiences (positive or negative). I'm just so desperate for a baby but part of me feels I'm just throwing money down the drain and my body will next accept the embryo 😢

Hey @Louweeze. Welcome to the thread and I'm sorry to read about your journey so far ❤️.

I can't remember the exact cost of the tests, but I think with the consultation they were about £2.5k. I might have totally forgotten but I think this is a ballpark. Also depends what tests he wants for you. I'd had some recently so he can take those into account.

I'm on steroids, Cyclogest and intralipids and was on super ovulation too (I'm currently on my 'break' from the drugs but will go back to it). Negatively is that I've had 7 cycles and not fallen pregnant, which is a bit concerning as I wasn't having trouble falling pregnant before - or at least I wasn't so aware of it. I have however lost a tube as my last pregnancy was ectopic so I have got another hurdle. Other than that, the clinic are helpful and friendly and I haven't felt any side effects of the drugs. I'm still hopeful of a sticky BFP one day.

Please don't lose hope. Dr S will have a plan for you to try, and it's absolutely worth at least another shot, as long as you are able to xxx

Hi everyone. Hope you don’t mind me jumping on this thread. I went to see Dr S following 4 miscarriages and was put on his complex plan. I fell pregnant on the first cycle but went for a first scan (7 week ) and could only see a small sack so a 5th miscarriage.

Feel very disheartened with the process now as we have been trying for 2 years and just turned the dreaded 40 so feel like I am running out of time. Does anyone know if Dr S changes the plan and what else he suggests following unsuccessful attempts?

@Louweeze and @Tango82 I can respond to your similar questions in one go.I saw dr Shehata firstly with steroids and intralipds and had a miscarriage. He added hydroxy to my plan and I had my daughter. I did wonder why he didn’t start with the hydroxy but he does seem to change your plan after miscarriage. I would recommend him.

Also@Tango82 I was 41 when I first saw him, 43 when had daughter. I think he’s blunt enough to tell you if there is no hope and don’t believe he gives false hope x

@myrainbowjourney thanks for replying that's really helpful I think I will book in with him. I really hope you get your 🌈 baby soon 💕

@Naticle congratulations on having your baby! Reading your post really gives me hope!! Can I ask how much hydroxy were you on? And were you on it for the whole pregnancy? Thanks for replying xx

@Louweeze I’ve no idea now of the dose. I’m sorry. I believe I started weaning off all meds at 16 weeks though. Def not for whole pregnancy x

@Naticle no worries :) thanks thats so helpful x

@Louweeze thinking about it I do remember I had to take for a few months before TTC. This may have changed as I’m sure I saw something about a ‘loading dose’ during covid.