Immune/NK cells pred thread #31

[VenusStarr]

Hi all, we've fill up the last thread, so starting a new one. Will start tagging but feel free to add anyone I miss!

Thank you so much for sharing everyone. @Lily1990 I hope there is something DR S can help with you with. Keep us up dated on your results.

@VenusStarr I did test out my trigger for my first SO cycle just so i know going forward when to expect a true positive. I think i will probably test it out again this month as I've been here too many times getting a faint line, getting hopeful and then it being a bfn which i just can't be bothered with anymore. So i'll probably start testing from about 7dpt on the easy at home strips which are quite accurate I've found. Ovulation pains have kicked in this afternoon, I have 2 dominant and a small follicle on my left side so my whole left side is hurting, god knows how we're going to have sex today I can't even move!

@Privatemedical246 I was put on hydroxy initially which takes 6 weeks to get into your system so I couldn't try the protocol on my following cycle but after that I was able to so I think it just depends what your results show. It was frustrating having to wait, but I saw it as a chance to just get healthy in that time. As @VenusStarr stated if you end up on Humira then that's another drug you need to take first before you can start the protocol with steroids. When is your appointment?

@Privatemedical246 Oh also dr s advised my husband to get a dna sperm fragmentation test done too, so we managed to get that done while we waited in that time which was good as we didn't feel as though we were 'wasting' the month.

That sounds like a good plan @star2022 I know that intense ovulation feeling, it does feel like sex is the last thing you want when it's full on! It's all sounding positive for you 🙏

Thank you for your nice messages and well wishes everyone. 😘I'm going to hold out testing as long as possible. I'm quite scared about tomorrow and seeing the bleeding getting heavier.

@Privatemedical246 As star says, I think it depends on the protocol. I was allowed to have the steroids straight away. I asked for a few months supply so we could try naturally but with steroids whilst we worked out what to do/process/get ready for 1 last egg collection. We also had the DNA frag test but had pencilled it in for the same day as the first appt and by luck the results (fine!) were back in time for the follow up. That however depends on timings as they get sent to/from Denmark on certain day(s) of the week.

@star2022 ahh I bet you are feeling desperate for those eggs to release. Hope you can get through the next few days okay!

Thank you @Zest11, @star2022 and @VenusStarr. I realised I hadn't replied about testing. My first MMC was tested and they said if we didn't hear anything all was normal so presume that was the case. The others have all been so early/blighted ovum so no testing. I do carry a genetic issue but have been advised this shouldn't be the cause of miscarriages as it isn't known to be linked to these. We got offered full karotyping on nhs and everything else was okay. My husband sperm was above avg so I'm not sure I can get him to do the dna fragmentation as he seems convinced it will be waste of money. Hoping Dr S will be able to explain to him more why it is important.

The only other thing I know is my mum has a rare autoimmune condition and I've heard you are more likely to be genetically predisposed to this. I've Been told I've had celiac before but then negative tests since and negative biopsy. I've got some raised thyroid antibodies but below the "normal" range so nhs said it won't be that.

Not sure I've had my amh tested though! It said somewhere I have been can't find it. Will chase that.

It has been heartbreaking reading your stories bit it certainly also gives me hope that Dr S can help.

I'm intrigued if many people have had the testing done to find it isn't immune issues but I guess they wouldn't be on this specific thread.

@Privatemedical246 it definitely sounds that with all of the testing you have had done and what you have said, it is unlikely to be something genetic. The rare autoimmune condition your mum has and your raised thyroid antibodies could suggest something immune related. At my first Dr s appointment I asked him what he would do if everything came back normal (was so used to being told 'unexplained') and there are other plans. On the sheet he gave me, he ticked a box saying 'complex' but there were also other options including 'borderline' and something else...normal/basic perhaps so he will suggest something regardless? My results didn't indicate a specific autoimmune disease but he said I have high nk cell activation and something else...something to do with being in a pregnancy state (@star2022 is v good at explaining all the results!!) and that was enough to put me on a complex plan. I can't help but be a bit sceptical in that I'm not sure what the issue is as I had my son with no immunes medication, "just" IVF but the first transfer was a fail and the 3 after him either failed/miscarried so in my mind, something's not right but I don't know what...

@Zest11 thank you that's really helpful. My appointment is next weds. Can't come quick enough. We're you under the care of Dr S for your first child? I'm the same I know something isn't right for us to be miscarriaging so early each time. My son has the same genetic issue I have and is perfectly healthy otherwise (deafness). NHS have basically said you should have another healthy child within 2 years. Well it's been 2 years since I first fell pregnant after my son. I'm just desperate to have a sibling for him.

Good luck for testing day. Fingers crossed for you!

@Privatemedical246 i hope all goes well with your appt.

Curious, how did you get NHS to do karotyping for you?

My RMC didn't offer me any sort of options like this. They didn't even offer to do any blood tests on my partner. Im on their case at the moment for a hysterscopy...

@comingsoon786110 we had parental karyotyping through Tommy's after my 4th. I just kept asking and they relented. I was told they usually do it after 5 losses. But I'd read on the tommys website about it as a possible cause. So when we took our 4th loss in for testing, I asked again and I think the nurse took pity on us. Results were back fairly quickly.
Hope you can get the hysteroscopy sorted.

My temps have confirmed ovulation for Saturday so am 3dpo today. Think I might try 1 cyclogest a day from 6dpo (I looked back on my 4th pregnancy chart and that's what I did that cycle). Going to message crp about the hyfosy.
Interestingly I ovulated on cd11 in my letrozole cycle as well. So not sure it's giving me much of a boost 🤔 if they give me the hyfosy I'll ask what they think.

@comingsoon786110 the rmc consultant mentioned it but tbh we were already about to have blood tests to confirm the deafness gene. And so when we had the call with the genetic team we explained our situation and they had to get permission from the lead consultant who agreed to test for all genetic conditions. But It was written in the leaflet we were given when we had our 3rd miscarriage and was referred to the rmc on the nhs so I suspect you should be entitled to it? Maybe need to push again?

@VenusStarr @Privatemedical246 thank you both very much. Seems as though NHS don't run the necessary tests unless you ask them to which is disappointing. I am going to be requesting this at my next follow-up.

I have also been doing a lot of research over the weekend and will be asking for an endometrial biopsy with histological analysis. After this will be arranging my follow up with Dr S due to my 6th miscarriage. Hubby wants to try this month COMPLETELY naturally but don't think I will. I keep having to rearrange my hysteroscopy because I'm pregnant and then end up miscarrying anyway which has caused such a big delay. This time I just want to get it out the way so I can rule out my acurate womb being an issue or if there is any adhesions/ polyps etc causing the issue.

@VenusStarr Happy 2WW!! Hope the time flies by for you. Did you have ovulation intralipids this month?

@comingsoon786110 I asked for a biopsy when I had my hysteroscopy. Better to get reassurance. Do you know how long it might be before you have your hysteroscopy?

I didn't do intralipids this cycle. Im not doing pred either, but mught do progesterone. Am on hydroxy and aspirin. I've spoken to crp and they said I can have a hyfosy next cycle which is good (hoping it won't clash with dh's surgery 🤦🏻‍♀️ well see). Need to have it done between cd6 and 10 and it's near the next bank holiday 🙃 so it might not work out.

@comingsoon786110 it does seem that way. The leaflet I got given from nhs mentions killer cells and about having an biopsy whcih hasn't been offered to me so I have contacted my nhs consultant to find out more about this. I was "discharged" but could contact them for repeat progesterone but I'm unsure whether to continue with this every cycle if it clearly isn't working! I really hope Dr S helps me more with it all. Just so impatient! We are going on holiday too this cycle so at least this will help with being distracted whilst waiting but I know my husband would have wanted to try whilst away as it feels more relaxing.

@VenusStarr oh i see. Hoping for a beautiful BFP for you this month 😙 thats good about the hyfosy and hopefully you get some answers!

Did you biopsy and hysterscopy give you any answers?

I made my 3rd phone call to RMC today and they always say they will get back to me but they don't. I think i wont be able to try until August/September time which makes me nervous. Currently in my fertile week but will be using protection.

@comingsoon786110 that's so frustrating they don't get back to you. I've had similar even privately. @VenusStarr hopefully the hycosy will give you some answers whilst your waiting for your DH to recover too.

I wondered if anyone has modified their diet much in light of immune issues? My acupuncturist mentioned giving up gluten, sugar and diary. I’m thinking about if for my next transfer but also feel frustrated sometimes at giving up so many things. Already given up the booze 99% of the time and will be curbing my caffeine as I normally do before treatment rounds.

@Privatemedical246 Yeh I know soo annoying! Literally called this afternoon again and it was the same thing. 'Will call you back, there is a pile of other cases we just have to get through first'.

Also had an email back from the CERM trial and unfortunately they are no longer taking on any patients and have ended the trial early so cannot join that.

Literally had 4 baby announcements basically over the bank holiday weekend. Everyone seems to be having 2023 except me! GRRRR. There are some good days and some really bad days in this journey. It's too much emotion to handle.

I am looking forward to not trying for a few months though and just getting on with the summer and super happy to be off the meds. Does anyone know, if I want to start trying a particular month, how many weeks beforehand shall I start on my HCQ again? Also, if I am off of it for about 6 weeks, when I start back do I have to take the loading dose again?

Hi all just came across this study published just last week regarding steroid use at 10mg and recurrent implantation failure in IVF. It's interesting because my ivf clinic was so adamant on the use of only 10mg steroid for my FET last year after 3 failed transfers and this study shows there was no difference in birth rates whether someone with recurrent implantation failure takes steroids at 10mg or not. I wonder if this will change their protocols 🤔 I also wish there was a study like this to see the effects of 25mg as i know dr s always says 10mg wouldn't do anything.. Anyway heres the study if anyone wants a read (yes the geek in me loves stuff like this 😭)

https://pubmed.ncbi.nlm.nih.gov/37129654/

@Ems123456789 I know the feeling of feeling too restricted but this month I have made a conscious effort of eating healthier but not restricting sugar gluten etc. I just eat better in general and have more fruit and veg so hoping that does something lol

@Zest11 ahh thanks haha, lets hope i'm actually explaining them correctly 😂 How are you doing? thinking of you!

@VenusStarr so glad to hear you can get squeezed in next month, lets hope it doesn't clash with the surgery, and an even better idea lets hope you wont need it next month! 🍀

@comingsoon786110 I'm sorry i dont if you'll need the loading dose again, i'm assuming you shouldn't if its only been 6 weeks but worth asking to make sure.

@Privatemedical246 good luck for your apt!

@comingsoon786110 everything was all clear. Which on the one hand is good but then nothing to do / treat.
I'm sorry the rmc aren't being helpful. I hope you hear more today. An enforced break can initially be hard but in the end I found it nice to not be thinking about everything all the time.

I was off hydroxy for 5 months and did do the loading dose. When I did the loading dose the first time, Dr S said that we could ttc straight away.

@Ems123456789 I haven't changed my diet other than very low alcohol and reduced caffeine. Like you, I'm frustrated at everything I've already had to sacrifice.

Hope you're doing ok @Zest11 has the spotting eased?

Thanks for sharing the article @star2022 will check it out.
I think I will be on for the hyfosy... not feeling very hopeful about this cycle.

@VenusStarr What dpo are you today? It's still so early, don't give up just yet. I've officially started my pred this morning, I had ovulation pains most of monday night and tuesday so I thought best to leave it another day in case I hadn't quite ovulated yesterday.

Does anyone know much about DHEA? And whether dr s lets you take it alongside the protocol? I recently came across low testosterone in women contributing to infertility so I had mine checked with my GP and it came back at <0.4. I'm now wondering if this is also an issue for me that needs addressing 🥴

@VenusStarr perfect, ill be off of it for 6 weeks or so before trying again depending on how my hysterscopy goes.

Has anyone tried probiotics before to help with gut health? Also, thinking to try a few things for vaginal care/health that I have seen a few women on here talk about such as symprove, canesflor vaginal pessaries (this replaces the god bacteria) or balance activ bv pessaries (this improves the pH balance and helps the good bacteria thrive). I think the active ingredient is lactobacillus.

It has come to the point where I am willing to try literally ANYTHING.

@star2022 i took DHEA for 3 months before my last egg collection. That collection I did yield better results and it was only the DHEA and Chinese herbs that I added in.
towards the end of the 3 months it was giving me greasy skin so I did taper down the amount.

@comingsoon786110 I take symprove, it’s very good for gut health. I rarely get bloated or a bad stomach. It’s much better than tablet probiotics in my opinion. Though I can’t credit it for any fertility success yet.