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!

@VenusStarr ahh that's annoying they have found you could have endo at this stage. Have you ever had a laparoscopy on the nhs? I don't know how long the wait would be though. I had one several years ago and I want to say it took a month or 2. Could that be an option for you? If you are with a nhs fertility clinic already (as I was) that could speed things up for you but by the sounds of things I'm not sure you are? Otherwise it may have to be the long route via the GP.

I just read back through my notes and yes I have high activation but normal count. Not excessively high but enough to be in the high category rather than borderline or normal! Yes I worked out the costs for SO and it was a lot! I worked out it would be approx £1000 a month and that put me off as I just sort of assumed I would have 6 failed goes and then end up going back to IVF. My husband and I are coming to the end of all of this so I thought one last EC and see where that takes us.

Thanks @Zest11 I'm not under the hospital any more. I did asked about a lap when we were first referred but they said there was no need. I checked with Tommy's too and they said they didn't routinely do laps. I don't think I have typical endo symptoms though. But then I don't have typical fibroid symptoms either. Just so frustrated that we've wasted all the time. Feel like this cycle is pointless as it'll end in yet another bfn. I don't think I can face surgery and more waiting.

I can relate to that coming to an end feeling ❤️

@VenusStarr sorry to hear re potential endometriosis. I'm questioning if I have endometriosis and have been pushing for a referral to a nook specialist on the NHS - which is taking ages.

I apologise in advance for the following waffle; I've spoken to Dr Shehata a few times about how having endometriosis and adenomyosis could be causing all my problems and my losses - and I was kind of shot down that these conditions don't cause recurrent losses - but can cause infertility... Which in my opinion amounts to the same thing.

A quicker way to get a referral into the NHS system would be if you have a consultation with a reputable Nook endo specialist privately, who can then write to your GP with a recommendation for referral. You can then speak to you GP and either request a referral to your local gynae for a laparoscopy or you can be specific if you want to and request an out of area referral to a specialist, based on all your history. You want to seek excision not ablation, so if going via general gynae make sure you discuss methods of removal.

One thing I would do if you do decide to pursue seeking a lap via NHS is play up the pain side of things vs infertility. So say you have considerable pain around your cycle and it's getting worse.

Sorry I've gone on a bit here. I'm kind of in the middle of all this at the moment so wanted to pass on all I have learnt thus far.

I have read that endometriosis and adenomyosis can cause a heightened immune response - and also that after a successful laparoscopy (depending on severity and level of excision) that fertility can often be successfully restored! Lots of ladies after years of heartbreak have a successful pregnancy after a lap.

Currently I'm pursuing both routes - seeing if Dr Shehatas protocol can help me, if I can actually get pregnant again, whilst waiting for my referral appointments to come through for a lap with a specialist.

Dr Shehata said to me that his treatment for ladies with endometriosis and adenomyosis is the same - regulate and bring down immune response - so - I'm hoping that the meds might bring down inflammation enough to help things happen. So your plan could still work now you've added in the extra meds too!

Hope all this info helps. Don't give up. This might be the real answer you've been searching for. X

Thank you @HopefulH ❤️ you've helped calm me down a bit. That all sounds sensible. I got a confusing message from the nurses - just saying if Dr Edge thought it was an issue, she'd say. I replied saying this is the first I'd heard of me having an endometrioma, she'd told me she thought it was a dermoid cyst! So I'm just checking if the letter is correct? No reply. And now its Friday evening. I've really not missed all this anxiety and stress. I'd got into a really good headspace and this has knocked me back again. Dh said I'm distracted and grumpy (true). I just hate how much of life all this takes and I'm not sure I have the energy to do this anymore.

I hope maybe being on the full complex plan helps keep it under control. Maybe this cycle will work. If it doesn't I think I'll ask to see Mr Jan for another scan and second opinion.

I hope you cannavigate the system xx

@InvisibleDreamer I am so so sorry to read this, i'm heartbroken for you. I really hope you have some support around you while dh is at work this weekend, thinking of you x

@Zest11 thank you for the luck, I had my polyp removed which all went well. Better than I expected and found that it was actually a 'big polyp' around 1cm, not the half a cm that was seen on the scan so i'm glad we got it done privately. Also just noticed my nhs urgent referal which should have been reviewed by 3rd april has now been pushed back till the 9th june! So i'm glad i've just got it done and didnt stick around for the nhs. We've been given the go ahead to continue with SO so i'll be back on meds at the end of this month. I understand your concerns with not knowing what to do, I guess you just have to go with your gut and how you feel. I was the same as @VenusStarr in that i really couldn't do a 3rd retrieval again as i was pretty scarred by last years rounds and stresses with the clinic. Will you be taking dr s meds alongside ivf?

@VenusStarr I am so so sorry to hear this, was this picked up on a normal scan with Dr Edge? Is there any way of a confirmation whether it is actually endo? I think it depends what stage endo it is for removal, but also I do think the meds we're on with dr s can help lower the inflammation so there's a possibility that it could all still be fine without needing surgery? I hope you manage to get some answers. I can imagine it being really stressful having a bit of hope and then getting hit with something all the time. I really hope you're okay ♥️

@HopefulH sorry your first SO cycle didn't go to plan, I also wonder why they are increasing the dose rather than just bringing your scan date forward? Was it your period that came while you were on progesterone? Is it worth getting a progesterone check done to see if you need a higher dose?

@star2022 I'm sorry I forgot your hysteroscopy was yesterday. I'm so pleased you had it done and got rid of the polyp ❤️ good news you can get back on with superovulation next cycle. When will you be due af?

I've calmed down a bit now. Am on another thread and someone with an endo diagnosis has 3 endometriomas and they've not recommended removal as it can cause more issues. I think its just a shock that I was told one thing and the letter is completely different. I got a dismissive email from the nurses. I don't want to complain as I like Dr Edge but the way they've told me is bad. I'll try and call on Monday.
I'm hoping the immune meds are helping anyway. Just in the horrible limbo phase.
I'd had hope this cycle and now just feel hopeless again 😞 xx

@VenusStarr Please have hope! As @star2022 has said, the immune meds can be enough to lower inflammation caused by endo - so with the new added meds this cycle it could still work for you... that's what I'm hoping for. I understand it's hard to take the knocks all the time however and agree, it's a less than ideal way to be told via letter, when this wasn't mentioned to you in person. Let us know how it goes when you bring this up with CRP.

@star2022 I'm glad your hysteroscopy went so well. Hopefully you can move forward now and it's nice to know you've had it done by someone you trust as I think NHS it can be a bit hit and miss anyway!

I don't really understand why they are upping my letrozole dose... maybe I should have asked that. I'm just going along with it and will see what happens this cycle. I did actually come on my period the other day so I'm on to the next cycle and I really don't understand why it came early. I'm thinking it maybe actually came on time, and my previous two cycles were out of whack - because I came on 14 days past trigger, and I think I probably ovulated shortly after trigger - so I don't know if that sounds about right? I'll definitely ask about progesterone though as I do historically have low progesterone, because I don't think I ovulate easily. Who knows. Every cycle just seems so different!! I'm now booked in for SO and Intralipids this coming Friday, so I'll see what happens this month. I'll be on CD 9 this time.

Onwards... hope everyone else is okay.

@InvisibleDreamer thinking of you and hope you have some people looking after you this weekend x

Hello everyone, I'd love to join this thread. I had my fourth miscarriage last week - an early one at 5.5 weeks, but feeling so exhausted and fed up of this.
I've had the NHS recurrent miscarriage tests and it's only shown mild PCOS, and I've taken metformin, letrozole, supplements, and cyclogest from ovulation and still miscarried.
So I've booked an appointment with Dr Shehata on Tuesday to have NK cells checked and for DP to have the sperm DNA fragmentation test. It would be lovely to have the support and advice from you ladies as we go through this journey too. I've read a lot of the past threads and I'm rooting for everyone here to have their much deserved babies.
Also @InvisibleDreamer I'm so sorry about your loss, I know how raw you must be feeling and hope you are being well looked after. xx

@VenusStarr I’m just catching up seeing how everyone is doing and always look out for your posts. I’m sorry you are still on this torturous journey. Have you discussed taking Tacrolimus with CRP? I tried so much with them, including all investigations, IVF and upping all of my drugs to max levels and Tacro was the only thing that eventually worked. For my next baby I may try to cut out everything and just go for Tacro, I know they’ll be insistent I need intralipids but I was never convinced they were doing anything.

Hey @StillTrying10000 thanks for messaging and thinking of me. They haven't mentioned that drug to me yet. We had a 6 month ttc break after the disaster of last year's ivf. We've got no embryos left and I don't think I can face ivf again at the moment. So this is our first real cycle trying gcsf (I did use it in my ivf transfer last October but neither embryo had a chance really so I'm not sure it counts). I'm due to take the gcsf on Wednesday. I'm not hopeful that we've caught this cycle, despite things going to plan with the meds, trigger and timings of sex.
I hope you're doing well 💗

@Lily1990 I'm so sorry about your losses and You're going through one currently ❤️ sending you lots of love. I hope Tuesday goes well with your appointment. I personally found the results one overwhelming more than the first one. Have you got that booked? I hope you get some answers xx

Does anyone know anything about Strep throat and how this might effect our chances this cycle? I think my husband and I both have it so going to the drs tomorrow to test and presume we will be give antibiotics. I'm just wondering if this will damage our chances this cycle and if we should not bother. Never had strep throat before and I didn't realise it's bacterial and not viral! Big sigh - so fed up of things going so badly for us all the time. I'm really not sure how we keep picking ourselves up and carrying on... the grief is intense today.

@VenusStarr I hope you manage to get some clarification with the letter tomorrow, I can imagine i'd be feeling just as confused as you if you've been told one thing but the letter says something else. Unless she maybe got a second opinion from dr s and he thought it was an endometrioma? Either way its definitely misleading and I hope you get some clarification tomorrow. You're still in with a chance so please don't lose hope, you've hit the right days and everything with follicles and lining was great so just focus on the positives ♥️

@HopefulH Sorry to hear you're poorly, It must be the meds supressing your immune system so you're more likely to catch things. I wouldn't worry about it affecting your chances as you're so early on in your cycle, get the antibiotics tomorrow and by friday your scan day, you should be feeling better and would have completed your course so don't stress. If anything see it as a good thing you've caught it now rather than when you're in your 2WW as i'm guessing an infection in your 2ww would raise your body temperature so more likely to affect implantation then. Hope you feel better soon! Also with your SO cycle, my cycle was much shorter too as I seem to be ovulating earlier than normal with the letrozole which i think is normal but i'd definitely get your progesterone checked. For my 1st SO cycle, I actually got a progesterone blood form printed from my GP, and just booked it in when i was around a week after trigger to check my levels after i'd been on the pessaries for a week and they came back around 150 which reassured me that the pessaries were working so maybe try that too?

Hi @Lily1990 I'm so sorry to hear what you've gone through and are going through. Wish you all the best for your appointment on Tuesday. My dh had a dna sperm frag test done with crp too and his came back borderline. I hope you get some answers.

@StillTrying10000 Thanks for sharing. Can i ask what the reason was for tacro? And had you tried everything else before eg the complex meds? And at what point did they recommend tacro for you? Sorry for all the questions!

@VenusStarr Sorry I forgot to reply back to your question, af is due on 24th April so not long to go. Going to try and enjoy the remaining week next week without being on any meds before it all starts again!

Hope everyone is well x

@HopefulH I'd mention to the GP about ttc / possibly pregnant and they'll prescribe antibiotics that are safe in pregnancy. Hope you're feeling OK and not too rough.

Thank you @star2022 ❤️ its like I've got a switch in my head that's just turned off and I'm going through the motions of taking the meds. It's like I can't allow myself to feel any type of hope 😞
I'll keep you posted on what they say. I've been having some weird feelings on my left side where I think my ovary is, so maybe the cyst / endometrioma. Feel a bit periody too. Think I'm about 5dpo today (my temps put me as ovulating on the same day as the trigger which might be right). Ugh, its all a minefield and impossible to switch off my brain!
Hope this week passes quickly for you. I vaguely recall my cycle starting a bit earlier after my hysteroscopies xx

@VenusStarr I hope this cycle isn't pointless! From what others have said, it seems you're on the right treatment plan regardless! Let us know what they say if you manage to get hold of the clinic - it is very confusing to be told one thing and then have something different in writing!

@star2022 ahh that's like the best news with the polyp! For them to see that it was actually much bigger and for the NHS to have delayed your treatment until June! Imagine if you had waited/wasted all that time! Enjoy your drugs free week or so!!

@Lily1990 I'm sorry on what you're going through and have been through. It's so so rubbish isn't it. I hope Dr S is able to find some answers for you...the first appointment will just be the tests but the follow up may have more answers/solutions.

As I was digging out all of my results, it said I had a 'good' response to all medications/treatment options...does anyone on here have something different to "good?" It occurred to me if I get to embryo transfer stage and this doesn't work then it's unlikely to be the problem in the first place?

Hey... more confusion. I couldn't get hold of anyone on the phone so left a message for a callback. Not sure if they tried as did have a private number call but just missed it, no voicemail. Then a few hours later got a new letter, no covering email saying dermoid cyst 🧐 I mean, Dr Edge did seem pretty confident it was that last week, so I'm inclined to accept that as opposed to the completely random endometrioma / endo. Just feel a bit off that they haven't acknowledged the mistake and that it has upset me 😕 @Zest11 @star2022

Think my GP is able to do my increase in thyroid meds, just got to be patient but it should be sorted this week. I am taking 75mcg now though as found a spare sleeve.

How are you @comingsoon786110 ? Did you gcsf go OK yesterday? I did get leg aches when I took it previously.

Hope you're doing ok @InvisibleDreamer

Got a busy week at work, so hopefully can't drive myself mad this week waiting for test day... x

@InvisibleDreamer honestly it never gets easier, but the hope of someday having a baby in your arms in the only thing that keeps you going. You almost become numb and just expect this to happen which is a horrible feeling.

The amount of money we are spending is getting alarming now and my husband has said this is the last month we are trying following to protocol and after this we are only trying naturally.

@VenusStarr the injection went well, although my husband had to stab me twice with it as he didn't get all of it out the first time. Yesterday I had bone pain for sure and I tested as I am a pee on a stick addict and it was of course negative. I'm 8dpo today and Dr S has said to test on Friday but we will see if I can hold out that long. So far I have had hardly any symptoms. My usual symptoms of pregnancy are: vivid dreams, sore boobies, pinching feeling and increased urination.

So far I only have lower back pain but I think that is more due to the fact that I was stuck in traffic for 5 hours on Sunday!

How are you getting on? Is it just me or does anyone else sometimes find the nurses at CRP to be a bit dismissive and they don't really respond to the entire contents of your email- they just pick and choose what they want to respond to.

@comingsoon786110 the aches are weird aren't they. Fingers crossed for you, 8dpo is very early. My dh doesn't come anywhere near my injections, I like to be in control! 🤣 doing mine tomorrow.

I've been weeing loads! Wondering if it's the pred, but I'm very thirsty too, so must be drinking more anyway. I remember my first pregnancy I had zero symptoms other than one very vivid dream the night before I tested (on the day after was due!) Can still remember the dream now. So don't count yourself out ❤️

I've had low level crampy twinges. I triggered a week ago. Feel like time is going a bit too fast to be honest, I hate testing.

I've had an apology from the clinic about the mix up. I know what you mean about how things are communicated sometimes. It's frustrating when you pay so much x

@VenusStarr ahh I'm glad to hear you finally have some clarification and that they apologised! So in terms of this dermoid cyst, do you need to have treatment for it? Or is it just one of those things that are just there and won't interfere? Your symptoms sound hopeful, keeping my fingers crossed for you!

@Zest11 Thank you! I'm getting impatient though, I'd rather just crack on with AF so I can start my meds and get on with a new cycle lol. Also, I just pulled out my results and I can't see anywhere where it says good or bad? I just have the reduction in killing nk cells which shows 63% with prednisolone and 33% with intralipids so I'm sure they would be doing something to lower their activity.

@comingsoon786110 yes I've noticed this with my emails. When I was contemplating my thoughts around getting the polyp removed with them or nhs, I'd find I was writing lengthy emails to raise my queries and concerns, but i would just get a sentence back, and it left me even more confused sometimes. I guess they just have so many emails, in the end my husband actually rang them to clarify everything but I know they don't always answer either.

Thank you @star2022 I think they'll just monitor it. I think if it gets bigger there is a risk of it contorting (?) But hopefully if they just watch it. It'll be ok 🤞

How you feeling after your hysteroscopy, is e everything feeling alright? Hope this week passes quickly for you to get started again.

Trying not to overthink (and failing). I'm still temping and they're looking good but I'm taking cyclogest so probably not a natural/true representation anyway. But I guess reassuring that my levels should be ok. Just been out for a lunchtime walk.

I'll have to dig my results out again too @Zest11

@VenusStarr if its nothing to be treated then I would take that as a good sign! fingers crossed for this cycle🤞 when is test day for you? Did you have trigger too? how long does that usually last in your system? I think mine lasted a full 14 days, it was torture!

I'm feeling good thank you, I don't really know if my period is trying to come early or if its just the after effects of the hysteroscopy as i'm getting a bit of light discharge when i wipe (tmi) I only had bleeding on the first day of the procedure and then nothing, but since last night been getting this. Just weary in case its an infection/period coming/after effects of procedure so I'm just on the look out for now. I know you said yours came early, I'm wondering if its mine too as I would be due on next Monday. Dh also had a repeat SA done this morning as CRP asked for an up to date one as his last one was in 2021 and I've got an apt with my GP at 3pm to get some more meds, and also to get my blood form to request bloods after being on HCQ for 3 months. It's all go here 😂

Does anyone know if you can get the free repeat DNA sperm frag test done with crp if results were only borderline? I'm sure Dr Edge said we can but on the form it says if results were 'abnormal'.

Thank you @star2022 its Sunday, which is only 12 days past trigger... 🤔 but when I did it the first time, I tested at 9 days past and it was still positive but gone by test day. Second time, I did have a very faint line on test day. But one of those 'is it there?' type ones. Dreading it.

What was your dh's dna frag? Mine was 16.4% and Dr Edge said last week that he can get the free one.

Hopefully af arriving early for you. I just remembered after my first one I had some pink, creamy discharge a few days after and I was worried about infection but it was ok. Just keep an eye on your symptoms, if you get lower tummy aches or unusual discharge get in touch with your GP for antibiotics. Actually, if you're seeing the GP today, maybe mention anyway and see what they say? X

Hi everyone, thanks so much for your kind messages, I really appreciate it! ❤

We had our first appointment with Dr S today and it was ok but a bit stressful. My partner was stressed about the costs (came to £2.7k without his sperm DNA fragmentation test), as I'd told him it would be about £2k in total. I didn't expect them to repeat tests I've had previously (which were over 3 months ago) so that drove the costs up.

Also, my partner couldn't do the DNA frag test as he hadn't done the right preparations (in terms of past week ejaculations - sorry massive TMI!) so that was a bit frustrating. Did you all find the DNA frag test was helpful and worth doing?

I had to remind us both that Dr Shehata has helped so many women with miscarriages have babies that it has to be worth a shot, even though it's massively expensive. We have our follow-up in 3 weeks so hopefully the results and treatment plan will help us to feel optimistic.

I hope you are all doing well. Good luck for your test day @VenusStarr , I completely get the anxiety surrounding it! I noticed the last few cycles I started to feel so anxious from about 7DPO knowing I'd have to test in the following days. x

Hi all, not sure if anyone on this thread would remember me but I had my 2 babies thanks to Mr S in 2018 and 2020.

I was wondering if anyone could tell me what the current protocol is for pred? With my second baby it was changed due to covid (both dose and duration reduced) but I can’t remember the details and wondering what it is now.