Immune/NK Issues - aka Pred Thread no 25!

[Eeviee]

An introduction to this thread. It has been running for many years and has proved a saviour for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

Discussions cover immune issues, NK (natural killer) cells, thyroid issues, PGS and many many more.

Welcome to the group no-one wants to be in 

Tagging people from the previous thread but please tag anyone else I've missed.

@KittyKatSmile @FrannyAnny82 @HoldingOn2Hope @Crystal2020 @Countrygirl220 @HarrietM87 @williteverhappen @Wishing5tar @hrtbrk2 @KtAgs @Gooe @peperethecat @zoe16 @williteverhappen @mezgaski @VenusStarr
@Ultra26 @ceebee21*@Luckyducky2 @weddinghelp1* @Hippo20

Thanks @Eeviee I've asked them to email me. How are you doing now?

@KtAgs so sorry you got a bfn. Do you feel like you are due your af as there is still possibly time? I always think day 10 is so early x

@Holdingon2hope I hope you are doing ok today. I'm worried my last post didn't come across right - I wasn't suggesting you should carry on - of course what you do is entirely your choice I just hope you're ok.

Wow what a week everyone - feeling really thoughtful and emotional today and pred related insomnia hasn't helped (I'm with you on that @ktAgs) I hope you are all taking care at home - I made a conscious decision today to stay off social media (only Instagram I'm not on fb) xx

I really don't know tbh @Eeviee and @hrtbrk2. I have tested this early for the last pregnancy and saw a line but I had a triploidy so lots of hcg in there because double the amount of cells? I've started spotting now - brown blood - which I've never had before. I'm due on weds/Thurs. My cycles are a bit funny because of lockdown. I don't know what to think tbh. I already thought you ladies were amazing but this is so stressful. Upmost respect for people having been on this rollercoaster for months. Xx

@Eeviee thank you, I've had a rubbish few days, well weeks actually and in a strange way I feel free again today. Free from pregnancy anxiety, free from meds and vitamins - they can eff off for a while too!

@hrtbrk2 Awww not at all, I hope you're ok.

I think I just need to sit tight and wait for the genetic test results to come back before I decide what to do next. I don't want o give up but I don't want to go through another miscarriage.
I want to maybe give it another go on Dr S plan but I'm annoyed about those inconsistencies with the early scans. I think I thought nhs ones aren't as great and believed he has the best equipment etc etc however the consultant yday said to me that my pregnancy measured about 6 weeks and 10 days ago it was measuring just over 5.5 so the 6 weeks scan I had with Dr S was definitely incorrect, he said even if there was a heartbeat there's no way at 5.5weeks he would have picked one up at 138bpm. He really believe it wa Amy heartbeat. I didn't want to believe it but Dr S also said to me or rather admitted he may have been to generous with his measuring - paying extortionate money I can't afford for him to make these mistakes again. So I guess I need to make it clear that if I was to continue a) I'm not having a 6weeks scan ever again as they aren't reassuring they are more stressful especially when measurements can be so wrong and b) I'm not having intralipids.
I know regardless of the scans I've had, nothing can stop an outcome but I think these last 2 weeks of been horrendously stressful and I'm not paying thousands to feel like that again.
I was just grateful for the care I received yday. They even organised a nhs motorcyclist to drop off the sample even though they don't do it on a Saturday but the consultant said he knew how important it was for me and in the worst case he would take it there himself. As much as the epau is always associated with bad memories for me I'm glad I had a good experience so if I ever had to go back there I wouldn't be so fearful.

On another note those of you who have had an MVA is brown cement type bleeding normal? It's just a weird consistency.

@KtAgs I tested at 10dpo and it was a bfn and was encouraged by the ladies on here to test again and it was a bfp at 11dpo. Keeping fingers crossed for you. It is stressful, like I said before I want the baby I just don't want this awful journey to get there.

Thanks @HoldingOn2Hope. It was nice to hear from you - I've been thinking of you. FWIW I think the tissue for baby can shrink when there's no cardiac activity. That's what two of my NHS consultants said (although not heard it since). So hard that the dates were varied and so not fair there are inconsistenices for you. Be gentle with yourself but also lots of treats! Xxx

@KtAgs I know I've been told that before too although the scan on Friday kind of showed the heartbeat had probably stopped in the last couple of days. I think I'm just annoyed about how inconsistent the scans were, the fact Dr S said he's been overly generous with the first scan and then the whole heterotopic scare. I just don't want to go through that again ever. It's been the worst out of all 4 miscarriages.
I'm Going to have good think through. OH wants to give Dr S plan another go but I'm kind of thinking do I go with Dr Taranissi who was always the 1st choice but he's extortionate and the clinic is like a bootcamp which put me off. I have time to decided I guess yet xx

@HoldingOn2Hope I’m so sorry you’re feeling let down. @KtAgs is right - the tissue does shrink in absence of a heartbeat sometimes. My two mmcs were opposites - in the first the sac and yolk sac kept growing in the time between scans, whereas in the second they shrank so it was much smaller by the time I had the Mc confirmed.

I agree it’s worth waiting for the results of the testing before making any decisions. Do you know how long that will take? It sounds like there was something unusual going on for you this time - whatever it was on your ovary - and I’m sure it was a total fluke and will never happen again.

@KtAgs sorry about the bfn. It just sucks. Stop all the meds but test in a couple of days just in case.

@HarrietM87 I think the results should be back in
2 - 3 weeks, they were the last time although inconclusive as it was only a sac. I had the same issue in my last mc the sac continued to grow to 9 weeks but no fetal pole was ever seen. The consultant yday managed to remove sac/fetus in one go which he said is best for results so I'll have too see what happens.

I do feel a little let down but naturally I'm feeling all sorts right now, I might feel differently in a few weeks. The 2 Epua scans tally up, Dr S 2 scans don't 😑 but I'm going to have an open chat with Geri about it, too scared to do that with him. Kind of lost confidence and I really don't want to feel that way. I started hypnosis last week and will continue it as I don't think I'll ever feel ok with a bfp again. I didn't this time but it gave me some confidence that I had a consultant in control. Maybe I need to let the hormones settle. Xx

@HoldingOn2Hope I think what you're feeling about the whole mistaken scans situation is completely understandable - when we are paying thousands to be treated you want to be able to put your complete trust in someone knowing what they are talking about, there is enough confusion and disappointment dealing with all this as it is. By the time we have all got to the point of seeing him we've all had a gutful of trauma and pain anyway so it shouldn't be this hard. I really battle with this idea that we are all frightened to question him and have to ask the nurses - why is it so hard to get a straight answer? I called the other day to ask a question and one of the nurses (who had all my reports in front of her) answered my question in completely the wrong way and got his notes completely wrong and then Geri rang me back to explain it properly! How can that be possible (And it wasn't a small error either!)

I really hope you do get some answers in order to look at your next move.

Hypnosis is amazing - I had it for my late loss about a year later and it was fantastic in helping clear some mental blocks it will really help you balance out again. Sounds like you've got a really good mindset anyway @HoldingOn2Hope in the meantime, enjoy a few gins and plenty of chocolate! Xx

@HoldingOn2Hope So sorry for you loss. I had one under Dr Shehata recently and testing all came back normal (I have one living daughter and then had 6 miscarriages following her). Were you on hydroxy? This is what I’ve been offered next and will be on the complex plan but I need to work out whether I try again which feels like a impossible decision to make at the moment! Lockdown makes it so hard to grieve, I just want to go on holiday and forget about all the trauma (not that I have the money to mind you after spending all our savings and more in treatment). Sending you lots of love and healing after the MVA. I had this also but with Dr S as NHS weren’t doing any surgeries or testing at the time (March) xx

@hrtbrk2 I'm glad you understand how I feel as it's not the first time I've had to challenge the nurses and it's always Geri that explains things properly.
Exactly how I feel that if I'm spending thousands and because I've been on gonal-f we have already spent almost £7k since December I want clear info. I don't want 'generous' measurements and 'maybes'.
I like the clinic and I had complete confidence but now I'm 😑

On a positive I've started my vits again yday after putting them away for a few days. I guess I have to keep myself healthy but I've eaten all the junk in the world in these last 2 days!

@NICK7nick7 I'm so sorry you've been through the same, it's really tough during this crappy covid situation. I'm looking forward to weaning off the pred this week so I can go shopping next week - it sure what for! I've always had a holiday after a mc but unfortunately that's not possible this time which is pants! I was lucky my local epau agreed to do the MVA - the head. It's there has been seeing me for the last 2 yrs and is also my gp's sister so she's always so helpful. Did it take long for results to come back? My last one came back within 3 weeks but not sure if this will take longer.

I presume Dr S will want me on hydroxy next time - I'm already on complex plan. I'd give it a go but I have decided o won't have early scans and if he insists then I won't be able to continue with his clinic. I've also decided that the Intralipids aren't any use to me so don't want those either 😬 he's probably going to tell me to Eff Off!

@NICK7nick7 have you started treatment again? Xx

@NICK7nick7 *head nurse

@HoldingOn2Hope wow! £7k - how much do you have to pay for gonal f? It's madness isn't it. That little bit of doubt is enough to send you round the bend. Have you had one mc on Dr S plan or more? (So sorry I can't remember what you'd said when I first came onto the feed)

I should think you have eaten plenty of junk... I would be disappointed if you didn't  the one and only saving grace in these times is that you can nose dive head first into a vat of sugary fatness and not worry! I totally get what you meant about feeling free of all the worry once it's over and I think indulging is part of it.

I don't even think I've ovulated after the trigger shot - my follicle was huge and I'm worried it has now just turned into a cyst and never popped. I certainly didn't feel anything and you'd think I would that size.

@NICK7nick7 sorry you have had a recent loss too - I always feel like going on a holiday when it happens too - covid 19 has a lot to answer for! X

@hrtbrk2 the first time I was on 75 units a day for 5 days and cost around £400, dose was doubled following month so about £750 and this last cycle about £700 even though dose was doubled Dr Jan told me to go Asda as they don't charge vat on fertility meds. Wish I'd known that from the start.
My local chemist has agreed to do them vat free too as I had another prescription form Dr S bit got a bfp. They are so expensive. I was on them as didn't respond to letrezole.

@hrtbrk2 yes sorry one mc on his plan and 3 prior to seeing him. This was my 5th cycle. I had 2 on letrezole, one on letrezole and g-f and then 2 just on g-f.
Maybe on your next cycle you need to see him a day or so earlier. What day did you see him on for trigger? Has he told you to up dose for next cycle? Xx

@HoldingOn2Hope no, they thought the last was a partial molar pregnancy so the tissue was sent to Charing Cross hospital for further testing and I had to do a blood and urine test. They discharged me last week and Dr Shehata said I’m OK to try again. I would need to be on hydroxy for 8 weeks first (plus start retaking all my vitamins as I threw them out after my last miscarriage as thought I was done this time!). I’m still not 100% about trying again as don’t know how I’ll cope if I miscarriage again, mind you I did say that last time! I guess I haven’t tried hydroxy before though so whilst there is a new option I feel like I should try. I also have hyperemesis in all of my pregnancies so it’s really hard even thinking about putting myself and my family through that again. I figure I have a minimum of 8 weeks to try to get ready for trying again emotionally, physically (and financially!) so maybe go for it and then see how I feel, even though going on hydroxychloroquine when not 100% maybe isn’t the best idea. Did they tell you needed to shield with Hydroxy or not really since it has been used to treat covid at a different dosage? I need to be on Prednisolone also because of the hyperemesis, and as part of the plan, so need to do the antibody test although hoping I can wait until nearer towards the 8 weeks since it feels a bit silly testing now when I won’t be taking them for a while

@HoldingOn2Hope sending you love. Don't tell Dr. S your plans regarding no intralipids etc in advance. I made sure I was given enough supplies to get me to 7 weeks when I had the local scan. I told him I was pregnant only at 5 weeks so my 6 week was actually 7 weeks.... Does that make sense? It meant I could cancel if I had bad news at the local epu.
Sending you love xx

@Naticle sounds like a plan! I already got extra boxes of steroids at the last appt and the cyclogest should be prescribed to me by my nhs consultant as he did last year. I don't think I'd tell Dr S anyway just wouldn't attend the appt - car broke down type of excuse.

@HoldingOn2Hope I didn’t go to my last appointment for intralipids and sent a really long apologetic email about it (about how I’d weighed up the covid risks etc) and the clinic never acknowledged it or replied! I’d definitely try to play the game as much as you can. Though it’s a real shame that you might have to. Hope you’re doing ok xx

@HarrietM87 I remember you saying you weren't having them after 12 weeks. I've had a good chat with my GP this afternoon and she's going to try and put me on a priority list for ivf/Icsi and said she will get a bereavement nurse involved to speed things up. I know Geri said Dr S will still treat me alongside when I asked a few months ago. It's a lot of chasing even with private clinics is it. I was told by one of the nurses on Friday 'don't beat yourself up over it these things happen' 🙄
I've kept myself busy today and going to do some baking :) xx

Hi everyone and I'm so sorry for your losses. Ladies doing superovulation with Dr S, is it set in stone to test on day 10 post-ovulation, so day 12 post trigger shot? Considering implantation takes place days 6 to 12 post ovulation and the most common day is day 9 post ovulation, it seems so very early. Especially as it should then take 2-3 days for hcg be detectable in urine and if it starts with level 6 for example... testing on day 10 may mean stopping the meds even if the test would have gone positive on day 12...What are your thoughts on this?

@HoldingOn2Hope I think you are an inspiration. I’ve had one of my “I can’t go on” days and here you are looking in to your options and coming up with a new plan of action after everything you’ve just been through. I honestly think you’re amazing.

Hi @Wireless77 I’m also doing SO and I agree with you that day 10 does feel very early. My understanding is that the intention behind it is to have us on the meds for the minimum time possible each month. There have been ladies on here who have tested negative at day 10 but positive at day 12 and they resumed the pred etc then with no problems. X