Immune/NK cells pred thread #33

[Jecca88]

Hey Guys, starting a new thread as we have run out of space - hope i have included everyone and sending lots of love x

@venusStarr
@Gizmo1983
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Amazing news @Hopeandfaith1990 - how long does the pgta results take? fingers crossed for the other two today. You're so right - my friend who was at the bbq has had three rounds of ivf, 7 transfers and said that this was really her last go and she is now pregnant with Twins. We have such determination, but its bloody hard to keep positive. Do you guys manifest? Also - protect yourself, don't think i have been to a baby shower in the past 4 years - even my bestest friends.

thank you @Gizmo1983 - we are all in this together. I feel so understood on this thread. its very validating :)

@Gizmo1983 Are you on low dose aspirin? Xxx

Thank you @Objectiontime@Jecca88@Gizmo1983🥰

we’ve just been called to say we’ve one more to biopsy so our total embryo count is 4 now, sadly the other one did make it. So 4 have been PGT-A’d and I should know the results in about 3 weeks then I can (hopefully) get ready for a frozen transfer.

@Objectiontime I think you’re right, even with BBT and intense tracking there is still margin for slight error in timings and when everything is so small inside of you then a slight error can be a big difference in measurements / days etc. I know so many people who were ‘behind’ or ‘ahead’ and then ‘caught up’ on their dates as their pregnancy progressed. Manifesting this for you ❤️

@Jecca88 I do manifest but I also find it problematic haha but overall I do believe it helps. Just staying remotely positive is an achievement some days. Thanks for saying that re the baby showers, that makes me feel better.

@Objectiontime congratulations on the positive scan I am willing on another one in a couple of weeks when you should be able to see much more. One day at a time.

@Hopeandfaith1990 I know very little about IVF, but that sounds like a really great result to me. Everything crossed for the eggs and the transfer.

@Gizmo1983 so sorry to hear you're suffering- those migraines do not sound fun at all. Hope you're feeling a bit better today x

@Jecca88 you are braver than me, that's for sure! Sending hugs- it is no fun being surrounded by everyone else's happy news and wondering when it will be your turn. Soon, I hope x

As for me, have just had a lovely letter from the NHS saying that I tested positive for HPV at my last smear 😔. Apparently it's extremely common, but there are studies out there saying it increases the risk of miscarriage- just what I need. Does anyone think I need to tell Shehata about this?

I also had a FBC for potential allergies and my CRP is at 2.7 which apparently is still high for inflammation, so there's a way to go yet. Has anyone else had their CRP tested? I know they don't do it as standard at the CRP clinic so curious to know just how terrible my result is!

Trying to stay positive, and so far have had had no symptoms with the Hydroxy or Humira. Will miss the next cycle as will be on hols with a friend, and then all systems go from the end of July.

Lots of love to all x

@Hopeandfaith1990 Great to have 4 decent embryos and all sounding really hopeful. Everything crossed for you x
For me I am currently hopeful and not too worried about the dates. If there is some cardiac activity at the next scan I will be even happier. X

Hey guys
@Hopeandfaith1990 my pgta results were back within the week they said they very often come back quicker than they say ooooooooh how exciting got everything crossed.
@Objectiontime yes im on low dose aspirin and a fragmin injection think ill be on the fragmin the whole way. How are you doing?
hey @Fletchasketch there’s always something else isn’t there bless you, yeah I’d definitely tell shehata. He may do a specific treatment or something as you say it’s really common so he’ll have had loads of ladies with it. Ooooh a girly holiday how lovely ☺️
@Jecca88 how you doing sweet, am seeing loads of this fertylysis popping up I think Sophie from geordie shore has used them and she’s made a documentary about her journey apparently. May be worth a watch
xxx

@Hopeandfaith1990 i am really keeping everything crossed for your 4! How are you feeling post all the meds? Do they think you will be able to transfer next cycle?

Thank you @Fletchasketch - i am sorry to hear about your HPV, i had it years ago but it has resolved itself now. I am not sure if there is anyhting you can take to get rid of it? but also so common and i didn't know it had anything to do with miscarriages. Also - i don't think i have ever had my CRP tested, imflammation could be a number of things. I have heard about trying specific diets to reduce inflammation.

Oh yes @Gizmo1983 i have actually watched her doc, i think it was before she found fertylsis and was more just doing the 'general' exploration and she hadn't even considered immunology. I also heard about it on the worst girl gang ever podcast. Do you guys ever listen to that?

Thanks @Gizmo1983 and @Jecca88 I emailed the nurses and they've said they will advise if Shehata says to change anything. Just pleased they haven't asked me to pay for another consultation with him! You're right in that there's no treatment, and that it usually clears up on its own- my concern is that with my suppressed immune system, it won't shift.

The anti-inflammatory diet is a great shout, have already added loads of greek yoghurt, kombucha, berries, nuts and seeds and reduced processed foods to pretty much nothing bar the odd croissant. I do suspect allergies and have a referral to an immunologist to see if anything comes of that.

I do follow the 'Worst Girl Gang Ever'- I really like that they are starting to interview more healthcare professionals as well as readers' stories. The other podcast which is great is 'Don't tell me to Relax'- they interviewed Shehata the other day. Learnt a few things I didn't already know, so would recommend.

Oh great shout about the new podcast @Fletchasketch - i am going to try and listen to that. Have you had a coeliac test?
I cut out gluten 12 years ago because i had the coeliac test therefore it wouldn't show if i was one in the current blood test they do. Sounds like you're eating all the right things and you need to live right. I think i could do better with that, i am still drinking wine tbf, doctors have never told me to cut it out - only to keep it to no more than 14 units a week.

So I went to the NHS asking for a coeliac tests, they did a load of tests and I have the results- but have had no follow-up. Everything is in the normal range and so I assume no follow-up is good news. I will double check this with the immunologist at Bupa though.

Not always easy to change diet- I was recommended to eat two portions of oily fish a week. BF went to loads of trouble marinating a bloody salmon and cooking it and could only eat 2 mouthfuls- oh well omega 3 it is! I've basically given up alcohol as would find it too tricky just to have a glass here and there. Makes me sound terrible, I just really love red wine 😅.

Hi all,

I hope this is the right place to ask this…. Currently under a midlands based clinic and had recurrent miscarriage bloods done due to blighted ovum last year and 2 chemicals since. Found out I had 166 tpo antibodies.
unfortunately the clinic is super unresponsive and leave me super confused, they forget what tests I’ve had done etc.

can anyone recommend a fertility clinic within 2 hours of London?

feeling Hopeless :(

@Gizmo1983 I am pretty good, thank you, Hot like everyone else and exhausted from the excess progesterone I suspect but okay otherwise :) xxx

Funny the subject of diet and inflamation has come up here. I have several allergies and one thing my specialist suggested was to get them rechecked. Lo and behold I discovered that I am extremely allergic to dairy as well so I have added that to my list of things I cant eat. Hard being on the pred though, since it can deplete calcium so I am currently looking at suppliments.

So sorry you're feeling hopeless, I know the feeling. I can only comment on Professor Shehata at the CRP clinic in Epsom, he is extremely thorough which an excellent success rate, but also very expensive and quite blunt. He has an NHS clinic at Epsom and you would be eligibile with 3 miscarriages, though there will be a long waiting list. I have heard others use Fetilysis and 'Plan your baby' who are less expensive, but I can't comment on how good they are. Wishing you all the best, you're in good company here.

It's so interesting. I was listening to (yet another) podcast about an australian woman who had had over 10 miscarriage and then gave up gluten and had a full-term pregnancy. Will see what my tests throw up. How did you get yours tested if you don't mind me asking?

@Fletchasketch thank you so much for replying. I am totally new to this so I am so sorry for any dumb questions, I am incredibly overwhelmed and being honest spent the whole day in floods of tears.

just asking these in case anyone knows as I am totally googled out :(

• do I have to go to a clinic that specialises in immune issues or would any clinic in the UK be able to help with tpo antibodies?
• will I never hold a pregnancy if I have tpo on my own?
• ive read reviews on CRP and seen people spend 20k and don’t get anywhere… this is my worst nightmare as we have savings but wanna make sure we go to the right place
• Will taking low dose aspirin help?

thank you to anyone who replies, it’s a minefield and I am exhausted

I'm not surprised you're exhausted it is completely overwhelming- will answer what I can but I'm a long way from an expert. One thing I found really helpful was to use Chat GPT to input my history, my results, anything of note and see what the recommendation was. It was very very close to what the clinic suggested, though I'm sure not infalible.

I've never heard of tpo antibodies, but it does sound quite niche. If it's immune related, then I would imagine you're best off going to a clinic that specialises in immunology- the only other one I know is the Lister.

You'd need a doctor to answer your second point, I was told I would never carry to term without medication but that it's very treatable with a high success rate.

I think spending huge amounts of money with nothing to show for it is a fear we all have. You can see Shehata on the NHS if you're prepared to wait a bit. The initial tests will be around 3-4k and so you could always make your decision once you have those. There is no commitment to go ahead with treatment and we considered this.

I have heard of a lot of people having success with low dose aspirin, I wish I'd been taking it with my last pregnancy, that being said I don't think it would have been enough. CRP recommends the following supplements- and that's before testing, so good for anyone:
600mg CoQ10
2000mg vit D3
Prenatal
Omega 3 (they don't specify- I'm taking 2000mg)
75mg aspirin.

Good luck, I am rooting for you as I'm sure we all are.

Goodness, 10! Undiagnosed celiac disease is known to cause miscarriages, not sure by what mechanism. I have it myself but I was diagnosed many years ago so I have been gluten free for a ling time. To answer your question about my allergies, some of them I already knew about, but the dairy allergy was picked up by the York test. It's pretty good. If you Google it you can order the food allergy one which covers over 200 different good items if I remember rightly.

@Objectiontime interesting, you’re the second person to recommend York Testing. I now have the Bupa appointment with an immunologist but still good to know. Thanks.

Ooh, I hope everything goes well for you. Let us know how you get in x

Hey all,
Hope you don’t mind me joining this thread! I have now had 5 losses in the past few years, all under 10 weeks.
Recently seen Dr S and have high NK cells. I’ve been on hydroxy for 2 weeks now, have 2 more weeks before we can start trying!
Im also on letrozole as I have really long cycles so trying to shorten them. I’m CD13 today and I’ve peaked! This is weeks early for me. Freaking out as we BD 2 days ago. I didn’t expect my ovulation be be brought forward this much! We haven’t been on hydroxy long enough so for the first time ever I’m hoping we don’t catch 🥲.

Hello @Jecca88 sorry for the late response! It actually took me a lot longer to recover from egg collection than I thought, I had the procedure on the Wednesday and I was uncomfortable and bloated and didn't really feel 'normal' until the following Tuesday! I wasn't really 'in pain' as such but I definitely was still feeling the effects.

I am hoping to do a transfer asap if we have positive news re PGT-A but I'm not sure what an actual timeline looks like yet. Its all very vague on the internet and comms from the clinic as its so dependent on about a hundred diff things. Annoying for my type A personality ha ha.

Oooh thanks @Fletchasketch I'm going to listen to the Shehata episode.

I cut out alcohol about 3-4 weeks before my EC but I've def had a few glasses since and then will cut out again 2-3 weeks before a transfer (fingers crossed).

@Sunshinehope12 Welcome and sorry you're here and feeling hopeless. The second I started to take action I felt a little bit of control come back which helped. Finding the right expert to support you is also really important. Are you NHS or private atm?

@Morgan236 So sorry to hear you've had losses too but this is a safe and supportive space with lots of knowledgeable and sadly experienced women on here. How are you finding the hydroxy? I'm on it too. I'm fine now but when I first introduced it I had a few side effects.

Hi all, sorry went a bit quiet I have a massive house renovation enough to keep my mind off the whole ttc!!! But still reminding me whether to have a nursery or not in there 😞 anyway@Gizmo1983 and @Objectiontimehope everything is still ok I am so happy for you guys for these new milestones. @Hopeandfaith1990i am crossing everything for you so you can get a transfer soon so exciting!😊
@Morgan236 welcome! I feel like you and me have a similar journey! I am under Dr S too since February started hydroxy for a week then I stopped as I had weird symptoms but still did a letrozole cycle and got pregnant and started the whole prednisolone, progesterone etc…!! But I think I had a chemical so I was a bit depressed about it as it was my 1st time with steroids… so now I have started again hydroxy I am on my 5 weeks so I am a new letrozole cycle and should ovulate next week… so nerves breaking!!!
‘were you also prescribed Prednisolone ? xx

@Hopeandfaith1990thank you! I’m so happy to finally connect with a group going through the same thing.

Im finding it okay generally, Im feeling a few symptoms, I’m waking up really tired and weak everyday and I’m getting dizzy spells… but I am also on metformin, letrozole and sertraline so I can’t tell what’s causing what and feel like I haven’t felt ‘’normal’’ in so long!
Sorry if I’ve missed your story on previous threads but can I ask how come you are doing an IVF route? I spoke to Dr S about this and he basically said no to me doing it 😂.

@CarpeDiem75thank you 😊. Honestly feels so nice to hear similar experiences. How has the hydroxy been for you second time round?
So Dr S wouldn’t prescribe me steroids as well because of the low mood side effect. I’m already on sertraline and have quite bad depression because of my losses so he didn’t want it to cause me to get worse. I am starting the IV drips too next cycle when I can finally start trying.
This whole process seems so overwhelming….and expensive! Fingers crossed it leads us to our babies 💫

Yes its quite validating to find people who genuinely do understand this journey. Sounds similar to me, did Shehata tell you to get an eye test? I think you're supposed to once a year when you're on Hydroxy.

Doing IVF with PGT-A testing. I've had 5 losses (all quite different) and then gone almost a year TTC since my last loss without successful conception so we turned to IVF. I'm not under Shehata but he is the Head of my NHS recurrent miscarriage unit so I do basically the same protocol but without the intralipids /infusions. Recurrent miscarriage also told me it wasn't worth doing IVF yet, but said they would refer me in October 2025 if no luck. After 2.5 years of this my patience was running out so we went private. Do you conceive easily? That may be why Dr S thinks its not worth it at this point.