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

We would consider it but my husband's DNA fragmentation wasn't brilliant - so we're gonna work that out first. We've seen the urologist and my husband did have an infection (which can cause early miscarriage) and he's on the pricey impryl. My AMH is 'fantastic' apparently but I do want to know about my egg quality as I know that's not an indication of it really.

As I had two early miscarriages back to back and they were both tested and both had problems - (one so rare the lab suggested we had karotype testing) - Mr S said that it was really unlucky and I said i found that difficult to accept and wondered about a conversion syndrome. He said he didn't agree with that theory but did concede there was probably another reason we didn't understand yet.

I would think your NK cells definitely are a factor. That's the only explanation I have for my first 20 week loss following post mortem. Xx

@HoldingOn2Hope, well I'm NHS funded but I had my funding transferred to a private ivf clinic. So far they have charged me for all extra meds other than my normal pessaries and oestradiol. So I needed extra levothyroxine/clexane/lubion injections, and was charged extra for those. They also said they wouldn't prescribe any meds from Dr S plan as not allowed any immune treatments. So I could only ask gp, as my clinic will do bare minimum :(

@KtAgs, gosh, I'm so sorry about your 20 week loss!!! Were you on Dr S plan at that point or did you start with him after that?
Sounds like karyotyping might be a good idea. Is it worth doing the test locally if price acceptable? I'm considering it too.

@KtAgs similar to me, my 'AMH' is fantastic too for my age 🙄 but not yet had egg quality tested I didn't know there was such a test.
DH's dna fragmentation tests were rubbish so he's been on impryl since January and need to re-test. We didn't see the urologist, at the time I felt like I was being forced into spending unnecessary money but wish I had now. Did they treat the infection with antibiotics?

No - first pregnancy - conceived after 2nd month of trying. No problems until 14 weeks when I got searing migraines and felt so unwell but no one could find any problems with me. I was told it was just how some women experienced pregnancy. But, I'm pretty sure it was my body attacking my baby.

Had karotype testing - all clear for both of us. To be honest, I think the stress of the whole f*ing thing is totally going to affect hubbo's DNA fragmentation bless him. We feel a bit calmer nearly 18 months after our first loss but it's so hard isn't it? Especially after we've got all of our family and friends who are fairly heavy smokers, like a good drink and are basically sedentary. It's not fair is it? Anyway, rant over for me! We got the karotype testing on the NHS so you can get it. Was quite quick in the end although pre-covid of course. xx

sorry should have said after sedentary *and conceive and have babies easily!

@KtAgs How unfair that you've been through a late loss 😞 life can be cruel at times. Would your GP or nhs consultant not offer you the karotype testing? I had it done on the nhs, it takes months for the results to come back.

@KtAgs I had a cry and rant yday! My bestie is pregnant and I'm happy for her as she's had a mc after her son and realky wanted another baby. But yes she smokes, her hubby smokes and enjoys weed too 😡 and on top of that she told me prenatal vits are a waste of money! My neighbour has had her 3rd child and I can't even have 1!
We will get there though, we all will x

@Jorun I didn't realise you could have the nhs ivf funding transferred to private or does that depend on postcodes and how helpful your GP is?

@HoldingOn2Hope - yep, antibiotics for us both. It may not make a difference but I like to feel like I'm trying. I'd quite like to get a scrotal scan for him too but Mr Gordon said we'd test his DNA again in a few months and go from there.

It's so frustrating sometimes with other people. It also undermines my husband's faith in the lifestyle changes as he struggles to understand why its one rule for some people and another one for him. Part of me sympathises with that, and another part of me is like pipe down mate, I'm here taking 12 pills a day and a bum bullet of an evening. You've got it easy! xx

@KtAgs that's just made me lol 😂 'bum bullet' haha! But it's so true! My DH is the same, he's not happy with cutting down on caffeine and I keep telling him that's the easy part!

The weather isn't helping today it's pouring where I am and I'm feeling helpless I just want to know what to do next and have to be patient. I'm Praying AF arrives soon xx

@KtAgs phahaha pipe down mate & a bum bullet really made me chuckle 😂 oh I’m so pleased we have this thread to speak to people who know how we feel and can relate 💗

Thank you for all the lovely messages regarding my BFN. I’ve had some pretty intense cramps on my left side (the side that I ovulated from) the last few days and I wondered if it could be due the progynova? I’m due to take my last tablets tomorrow (CD24) and have a break before starting again on CD4. Should I be anticipating a heavy and painful AF given they should have made my lining extra thick or did people not really notice a difference? Just wanting to stock up on pain meds etc. if so xx

@HoldingOn2Hope thinking of you 😘 fingers crossed AF appears soon and you can feel like you’re heading in the right direction again 🤞🏽

@HoldingOn2Hope, quick one as work getting busy, but yes you can transfer funding to a private provider. Moat ccgs will have contracts with private providers. You need to speak to your GP and they can start the process for you. If you need more details at some point I can explain the whole process (we had our transferred aftrr getting appointments with 6 months waiting times at our local nhs hospital).

Hey,
I think this pregnancy will be over soon.... last thursday, CB indicated 1-2 weeks, which was correct according to my ovulation date (i was 3weeks + 5 days post last period).
Today, it is still at 1-2 weeks. I am 4 weeks + 5 days (post last period).
I dont want to believe everything i read about CG digital test reliability, i think it is over again.
I will try to reach my doc and ask whether i should stop my injections of lovenox. And as long as i take progesterone nothing will happen.
S.

Ah @Sophfr17 - sorry to hear that. I wonder whether you could a beta hcg test via your GP for reassurance? Or if you can hold out until 6 weeks, get an early scan as this is likely when a heartbeat should be seen? So unfair that you have to worry about this. I wish it was easier - pregnant or not pregnant - not this horrible in between land. Sending you love sweetie. We're here if you need us xxx

@Sophfr17, do not stop anything and try and get a hcg blood test done. These Clearblue weeks indicator tests should be banned, they almost gave me a heart attack last week. With my previous pregnancy the weeks went up as expected, I miscarried anyway a couple of weeks later. This time I got 1-2 weeks on 11 dpo, a week later it went to 2-3 weeks as expected. I was expecting it to go to 3+ last week as all my calculations showed my hcg should be over the 3+ threshold, still 2-3. No change next day either. At that point I was convinced it was over again, but went for a blood test. My hcg at this point was over 3,000 (Clearblue range for 3+ starts from 2750 something). Once I found out I did another two Clearblue tests to experiment. One came back 1-2 weeks and the other one 2-3 weeks from the same urine!! And the day after the test still came back at 2-3 weeks. At that point I gave up and got another hcg blood test done a couple of days later, it was almost 10000 at that point! So whilst I don't want to give you any false hope and weeks not changing has been a sign for some, my experience is very different. I read later in small print that you should only use first morning urine and that drinking may affect the accuracy of these weeks. For me it was wrong with the first morning urine too. I'm up 2-3 times every night to go to the loo, so perhaps that's the reason? My urine was not concentrated enough? But then again I got 1-2 weeks and 2-3 weeks from the same urine whilst my hcg was well over the 3+ threshold...

Hi girls,
Thanks for your support.
I used morning urine, although (sorry) this one was very dirty from the progesterone pessaries i put in last night. Maybe it had an effect, although my hopes are close to 0 at this point.
I will do hcg blood test tonight at he hospital, and another one on monday. But i am sure it is over. The wait is going to be hard. Im just so tired :(

@Sophfr17 I’m so sorry fingers crossed for you all is ok and well, I would carry on treatment until you know for sure.

Not sure if this will be of any interest to anyone but I found it quite helpful as I’m at the start of my fertility treatment with Dr S,
Tor Sandford (Frankie Bridge’s sister) has done a really open and honest journal if you like on her IG page.
She’s being treated at ARGC clinic and is now about 20wks pregnant through IVF with twins, loads of info and just generally someone that talks openly about her struggles etc,
May be someone to follow and look back through her highlights, just for info etc
Hope this is helpful to some one
Take care everyone ❤️

I follow her on IG as well @lrl12 I've found her journey really reassuring and pretty informative. X

@Sophfr17 Keeping fingers crossed for you, it's horrible having to wait. Like the others have said don't trust the CB tests, I'd never buy them again! Mine were going up as expected last year only to have an empty sac. I tested 10dpo with this last pregnancy and it was negative. Used the last one I had a few days ago post miscarriage and it was positive. Tried another test and negative. I sat wondering how could it have been negative when I was pregnant and now has managed to detect whatever hcg left in my body almost 2.5 weeks post erpc.

@LRL12 @KtAgs I follow her too! She's amazing. Is made a phone appt with ARGC and then came across her insta page and it kind of convinced me to go ahead with the appt and so did she! One of her friends is being treated by Dr S and she's also very positive too xx

@HoldingOn2Hope I thought of you when she said ARGC as I remember seeing one of your previous messages about possibly seeing them,
Hope your appointment goes well,
Does her friend have an IG? I’d like to follow her.
Xx

@LRL12 I've had the telephone appt I just can't make any decisions until my results come back from this miscarriage. They do similar to Dr S but ivf too as that might be next for me. I can't see myself getting a nhs ivf spot even as a priority patient anytime soon. Her friends name is CharlieLaunder, I think I read that she had got pregnant while waiting to see Dr S so he wasn't happy but gave her immune therapy and she's doing ok, almost due!

@Sophj19 I'm with the other ladies, don't stop anything yet those tests are awful. Again not wanting to give you false hope but if you were only 3+ and then 4+ when you took the tests there is every chance the clear blue just hasn't picked up the surge yet - remember they are usually taken by people who test at first missed period at which point they would show 1-2 and wouldn't expect to go up from there for another couple of weeks. That's the point you are at? Is there anything else that makes you think that's it's over? Very best of luck - will be thinking of you.

@LRL12 @ktAgs I follow her too! I wondered where she was being treated because I noticed she takes all the same things we do with Dr S but with the added extra of clexane injections and she's doing great! So that's handy to know!

I'm just sat in the car waiting for my app with dr jan to see what my follys are doing for SO cycle 2. Im day 9 so desperately hoping for enough lining/follicles to just take the trigger shot home. Who knows - perhaps I'll give Dr S's big shiny new door knocker a little rub on the way in for good luck 

@HoldingOn2Hope glad you finally got you bfn, not a nice feeling I know but one less thing to worry about as it was taking its time.
Hopefully AF returns soon.

Just on the prescription front ladies - I now get my pred, hydroxy and cyclogest from my GP, they said they were happy to issue it based on my initial diagnosis / protocol plan letter from Dr S. but I will say I think that's just because I already had a prescription for pred and cyclogest from when I'd seen dr quenby (as she's nhs) and they just added the hydroxy to it once my treatment moved on. So definitely worth asking the question - maybe book a telephone app with the GP and explain the situation. Xx

Hey,
Thank you all for your lovely messages. I went yesterday for a blood test, and depending on the results i will go again tomorrow. If i am only at 50ui or so at 4w+5 it is most likely over. No way i will wait for the scan in two weeks to get the bad news. If the blood test is bad, i will stop the drugs and let the mc happens. I will let you know.
I just have the feeling, im sure you know what i mean. Every time this happened, I aways "had the feeling" and i was never wrong. Maybe i will be lucky this time!
Take care all xx
S.

No @Sophj19 I totally get that - we know our bodies and our instincts count for a lot. I'm so sorry x take it easy x