Immune/NK Issues - aka Pred Thread no 26

[KtAgs]

This thread has been running for many years and has proved invaluable 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

@HoldingOn2Hope*@Crystal2020 @Wishing5tar*@hrtbrk2 @VenusStarr @jellystar23 @3verhopeful35 @hazlet2 @whyisthistakingsolong @NICK7nick7 @LR12 @Lalaifa @lookingforanswers86

Please tag anyone else I've missed.

Hi all. My husbands sperm DNA fragmentation came back at 11.6% DFI. Thet have said its borderline and advised scan/tests/consultations. I thought this level was not too bad but obviously not an expert.. Can anyone shed any light? My DH is already on Impryl.. I don't want to spend money at the clinic unnecessarily x

Ah we did the comet so I don't know how that compares? Hubby's wasn't brilliant and was outside the normal ranges for low, average and high damage. He didn't get a DFI score.

Hubby was put on impryl and lifestyle changes. We also had a consult with the urologist. Lucky we did because he also had an infection we didn't know about. Xx

@Whyisthistakingsolong I just pulled our report out and anything under 15% is considered good quality. Is your report broken down into moderate level % versus high level % fragmentation? I wonder does that make a difference...

@Whyisthistakingsolong As far as I know from doing my own research anything under 15% is considered very good. My DH's was 11% after 6-7 months on impryl and making lifestyle and diet changes. When the clinic sent us the results they also sent info that it was borderline and we should consider seeing the urologist. I was confused as online research said it was considered very good. I also had ARGC look at the results and they also said it was fine and no further action. I don't know why the clinic sent that info as it did make us panic a little. We had had the comet test previously so couldn't even compare results.
When I called the clinic and spoke to the nurses, one of them said they ideally like it to be 10% and I asked if all that info about seeing a urologist, having scans blah blah was necessary. Tbh she was quite rude to me about it so I hung up! At our next apt with Dr S he congratulated us on the results and said it was excellent!
I came to the conclusion they just send this info out as they pls. Dr S was on annual leave when we received results so can't even say it was him getting us to spend more money.
Discuss it with him at your next appt and it's great you have a good score! Xx

@Whyisthistakingsolong my husband’s was 8% and Dr S said that was really good so it does sound like yours is a good result as well. It’s so close to 10% (if that’s the “cut off”, I can’t remember) - did they explain what further scans/tests/consultations are designed to actually achieve? What would be the outcome - if just lifestyle changes to get another percentage or so then he can just make them now I’d have thought? And it would only be a percentage or so so that’s what you’d be weighing up (the risk of that 1%ish difference versus the extra money). Congrats though - it’s definitely good news and probably one less thing to worry about (I say probably because I’m sure we all worry about everything nonetheless!) xx

@LookingforAnswers86 @rebecca9876 @HoldingOn2Hope thanks for your answers. Yes the report threshold said good but the letter said borderline. Does the number mean that only 11% are damaged in some way? Or all have 11% of damage? Hard to understand. Either way it sounds like we don't need to spend more to improve an already decent result, thanks ladies x

Hi All, thanks for all your lovely messages re. my genetic report. I got myself back in the rut of counting how many weeks I should be had I not miscarried and needed to take 5.
In the meantime I’ve had my results appointment with Mr S. We didn’t find much wrong - my activation marker on my NK cells was in the high range. At the time I felt disheartened that we’d found nothing really wrong and was so focussed on the treatment side that I didn’t ask any questions as to what this actually means. Did anyone else find out theirs was high? If so, would you mind explaining what it means please.
Mr S said I need intralipids from ppt, and four weekly from there and hydroxy until delivery due to him thinking I may be suffering from CHI. I wasn’t too keen on the thought of intralipids, but I know a few of you really rate them so this has calmed my nerves.

Congratulations to all those with new positives and healthy scans ❤️

Hi @Jellystar23 I don’t recall the exact figures now but both my number of NK cells and also my NK cells activity were both very high (3 something/ almost 4). I think the activity essentially means the effectiveness of killing, which is different from just the sheer number. They will have tested your blood samples against the various meds and then looked for the best response to different treatments, so assume that means you responded best to intralipids and hydroxy. Maybe also prednisolone but, if so, maybe he wants to try just hydroxy for now given Covid (that’s what happened with me but I moved to pred quickly as my levels just got worse - BUT mine are very high and yours don’t sound to be). But you’d need to ask Dr S to be sure, your plan will be personal to your own results and response to treatment.

Intralipids are really fine - you just sit with a drip in your arm for an hour, relaxing and most likely looking at your phone. No side effects (I’ve had none with any of the meds, except some insomnia and ravenous hunger on pred, but that may be the twins who so far are sticking!)

You could also email the nurses, they are really good at responding to questions on emails xx

@Rebecca9876 thank you!! What you said makes sense, my levels were only 1.73 but anything above 1 is high he said. On the NK cytotoxicity results, they were only 7% so normal but intralipids were the most effective treatment dropping them to 4% but I was unsure if this was a completely different test to the CD69, or whether this was his reasoning for choosing intralipids. I suppose i need to look at it as - I have normal NK cell levels but they are highly effective at killing.
He had me on hydroxy anyway incase I have a different immune problem to NK where my immune system is clotting the placenta.
I was on pred during my last mc so can sympathise with the constant hunger and insomnia but such good news that your pregnancy is sticking - I have my fingers and toes crossed for you!!

Hi ladies, I hope you are all well. I've been very quiet over the last few months, I just needed sometime away from all the group chats as my anxiety was really bad after my last loss. Congratulations to the new pregnancies, @KtAgs @Hippo20 @LRL12 @Rebecca9876 and I hope that the good scans keep coming.

So I got a bfp 2 weeks ago, I drove to London and back for my intralipids. But I started spotting a few days ago, tiny bit of reddish blood and the nurses at CRP told me to stop the aspirin and double the progesterone which I know is standard. The spotting has continued but is very little and brownish in colour ( sorry tmi 😐). I know from Dr google that spotting can be normal but with my history I'm terrified - wondering if anyone else has had this and how it worked out? I've had no cramping. I've been feeling in and off very tired but no real sickness or sore boobs. If dates are right I'd be 6 weeks tomorrow. Im so worried 😟

I've literally just moved area so trying to get my new EPU to see me (apparently they are doing no scans before 12 weeks for anyone?!) so spoke to my new gp who agreed to measure hcg last wed, it came back high (19,000) at what should have been 5.5 weeks which is very high - after googling, I'm not sure such high levels are a good thing. They've not done another to check it's doubling which is kind of pointless.

Hi @Eeviee so sorry you have been bleeding you must be really worried. I also bled recently and was convinced I was miscarrying yet again/ also drove myself crazy googling (and still do!). So if it helps give you some comfort, mine turned out to be something called a hematoma bleed (aka subchorionic hematoma or sch) - it’s reasonably rare (around 2% of pregnancies) but equally a reasonably common u/s finding for when there is bleeding. Mine also went bright red to brown quite quickly. Obviously can’t be sure what yours is but try not to worry until you know what it is, there can be many causes. Take lots of rest - I have basically put myself on bed rest (thankful for working from home!) and the bleeding stopped/hematoma has reduced in size. Worth trying just in case it’s that?

I’ve also had a terrible time with EPUs lately (two of my miscarriages were during lockdown and they essentially refused to help me - although I get that Covid takes priority atm it’s so hard when you can’t get the help you need isn’t it?). In the end I booked with Dr S for a private scan and he diagnosed me and gave me meds very quickly. I know it’s another expense but you could try to get a private scan for peace of mind? If not perhaps your doctor can refer you for an EPU scan if they won’t play ball when you go direct? Failing that you could try A&E (I’ve found them more helpful than EPUs recently although they don’t have transvaginal u/s).

Your levels are great and still well within the upper limits of weeks 5/6 (which are around 7000 to 30000 or 50000 depending on different charts) don’t worry! Can your GP not do a second test? Again you could go private for it - my GP couldn’t see me so I went to a local private GP for mine.

But sorry you are going through this. It totally sucks but just remember it could be anything so try not to assume the worst. My fingers are crossed for you and hope you get some answers soon xx

Ps @Eeviee I just set out upper limits that I found on a couple of sites and have been guided by - the lower limits are much lower for weeks 5/6. Just clarifying as don’t want you to then think maybe they are too low (if you are a worrier like me!). They sound really great! xx

Hi @Eeviee congrats and sorry you've been bleeding. I can't offer any advice my lovely but I think that HarrietM87 had a bleed early on and I think she's either due now or soon? @Rebecca9876 has given some good advice above. Its so stressful though. I'm sorry you're going through it and I have everything crossed for you.

Katy xx

Hi @Eeviee sorry you've been bleeding. I've been there and it's not fun. However many people do bleed and it's fine. One of my friends spotted the whole 1st trimester and had a healthy boy. Try not to assume the worst and rest if you can. Maybe pay for a private scan? Most EPUs will see you for early scan with bleeding (my local one did anyway). Good luck!

Another England lockdown does anyone know if CRP clinic will open as usual for intralipids /scans etc? X

I’m booked in on Thursday for scan and Intralipids on the 18th and not heard anything so assuming they are open as normal for anyone needing to go for treatment.
Hope everything’s ok @Eeviee try rest as much as you can definitely try and get second blood test, fingers crossed it’s nothing to worry about. X

I'm booked in for today. All health appointments are scheduled to go ahead i believe. X

I'm also booked in today! At 2.00. I was going to ask if the treatments can go ahead as usual. I wasnt sure because we have to travel all the way from Plymouth...I was scared this was considered non-essential travel.

@Eeviee Congratulations on your pregnancy! I don't know whether I can really advise with bleeding, although a friend of mine had bleeding throughout her pregnancy and all was fine. It's horrible and nerve-wracking but actually fairly common, so I've read.

Re Covid and lockdown, I haven't checked with the clinic (I have an appointment on Wednesday) but I'm fairly certain it falls under travel for essential medical care, so that's fine.

I find out on Wednesday whether the two Humira injections have worked and I'm praying they have, as I'm starting to doubt whether Dr S will prescribe two more in the middle of a lockdown 😬

Can I ask a question to the ladies on Dr S's superovulation plan please? Firstly, did you ask to be put on it or is it something he suggests on a case by case basis? We have decided to take a break from IVF and try naturally, but I'd like to try and speed up the process, so was going to ask him about SO on Wednesday. How does it work exactly? Would love a few more details so I'm prepared ahead of my appointment. Thanks! x

@Everhopeful35 he told me that he would not re-test me after the first set of injections as he wouldn't prescribe more than one round due to covid (this was about a month ago)...

@Everhopeful35 Dr S recommended superovulation for me given my age (almost 39) and also my previous ovarian reserve results (from back in 2018 which were low then). We said yes as why not try everything that helps?

You take letrozole tables for a short time at the start of your cycle to stimulate the follicles, then he scans you (around day 10 or so) to see how the follicles are growing and, based on that, advises you when to inject the trigger shot (ovidrel) and then have sex. Although we just had loads of sex all around that time to make sure! It was simple and painless (incl the injection).

I cannot recommend it enough because it worked first time for us - and we are hopefully having twins as a result (although the chance is very small and they did say it’s the first time they’ve had superovulation twins at the clinic in ages, so don’t worry if you are less keen!!!).

Good luck! Xx

@Everhopeful35 PS sorry don’t mean to come across as overly positive - I know it can take some time. I’m just on a high at the moment as it’s been such a horrible year until recently. But yes I definitely recommend and wish you soooo much success! xx

@Whyisthistakingsolong That is exactly what I was fearing! I think I was lucky to have got my blood test done last week, so at least I will know whether the first two injections worked. That's bloody annoying that they won't do that for you. Have you had any side effects on it? I've had dizziness and tingly hands and feet, which has freaked me out a bit.

@Rebecca9876 Thank you so much for running me through how SO works. I have this fear because of my IVF disaster (I had seven embryos PGS test abnormal) that my egg quality is a bit rubbish, so my thinking is that if I can release more than one egg a month then I might be in with a better shot of at least getting one decent one. Amazing news that you got twins on the SO plan. That would be a dream for me! I'm hoping Dr S won't have any objections to me giving it a try.

Just having my intralipids after a good scan. Baby is measuring on for dates at 11w3. Delighted but shocked as used to hearing bad news. Next hurdle is nuchal and harmony bloods. Eek!

Hope everyone gets good news from their scans and that everyone is coping as well as they can do with everything going on. Xx

@KtAgs awww brilliant news!!!!

@Eeviee I hope everything works out ok. From what i have read, I think people on medication like us / have fertility treatment are way more likely to bleed during pregnancy. It adds to the worry though:(

I had my first appointment last week with DR S. I really liked him although he did tell me nicely to let him be the doctor 😂😂😂 I do too much reading!!! Kind of limbo land now though I have my blood test appointment next week and guessing he will put me on hydroxy...and if it takes 6 / 8 weeks to get into your system then we cant start trying again until January...which feels so far away...