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.

@HoldingOn2Hope I am sorry you are feeling like giving up. Is it taking you longer to conceive than other times?
Sorry, I dont mean to pry or sound patronizing, it's very difficult to know what to do but just wanted to say that you haven't exhausted all options and that good things can still happen. Xx

Hi all! I'm new to mumsnet, I just joined so I could post in this thread.
I am 33, have 3 lovely girls ages 4, 6 and 8, never had any issues conceiving/with the pregnancies (no mc), I now know and appreciate how fortunate I was. I've always wanted 4 kids and finally managed to convince DH during lockdown to go for it. I got pregnant in May, lost the baby in July, got pregnant again in August and lost the baby in October. 2 back to back mc completely out of nowhere. First everyone said it was just bad luck (1 in 4 etc) but the second time round I knew something was up.
A friend recommened Dr. Shehata, I saw him 2 weeks ago, did all the (expensive eek) tests and got the results yesterday. I honestly thought covid antibodies had caused the MC but no, my nk cells count is high. I'm still in shock about this result! I started prednisolone and the pessaries yesterday as I thought I was ovulating- I've only had one period since my last mc so wasn't too sure about dates etc. I think it's too late and I may have wasted one cycle of meds sigh

I'm going to keep going but I'm a little conflicted about putting my body through so much when everyone tells me to just give up and be happy with 3. I am of course (people say the most hurtful things) but that doesn't mean that in my heart my family is complete.

My heart goes out to all of you, it is the hardest thing I've had to go through and I'm so sorry for all your losses.

@HoldingOn2Hope I know how you are feeling, I've been questioning whether it's time to give up aswell after 6 losses. I'm exhausted mentally and physically by the whole process and I know my husband would stop now if he could but hes trying to be supportive of my needs. I've been looking at adoption aswell and wondering if that might be a way to complete my little family but not ready to go there yet. Maybe time to have a rest and do some fun things, drink wine (or your fave tipple!) and remember who we were before we were all consumed by this madness of constant pills, injections, charts and peeing on sticks!! Sending hugs xx

@FruitandNut1 sorry you find yourself here. Honestly, no grief is more or less valid than any other, whether you have children or not. I hate the hurtful comments but I think often people just don’t know what to say, think they have to say something (they don’t!) and so say things like “what’s meant to be is meant to be” (my personal least favourite!) etc. One thing I’ve enjoyed about lockdown is being able to hide from these things - you don’t need it right now so avoid if you can. You can always pick up those friendships etc another time but focus on you right now, you are still grieving I’m sure.

You haven’t really started treatment yet so why not give it a bit longer and see first? Very best of luck with it - and you have a great support network here x

Thank you for your reply @Rebecca9876 you’re right, I haven’t really started the treatment properly and i must’ve ovulated on Tuesday so I think I’ll wait until my next cycle. I feel like I really needed someone to say this to me, I feel so silly as it makes perfect sense. I hope you are doing okay! I must catch up with the previous posts to get to know everyone xxxx

Hi there
Not sure if there is anyone on here who remembers me, I'm a bit of an old timer along with @Chickjen and this thread honestly saved me in the darkest days of my life so thought I'd pop back in. I'm happy to help out with questions if there's any way I can.

@Eeviee I'm so sorry to hear your news, I remember speaking to you in the past. Look after yourself and be kind to yourself

And @Luckyducky2 I just wanted to say that yes, I had an IVF success story on Mr S's plan after 4 losses, one of which was on his plan. H2H if I can x

Sending strength to all of you wonderful ladies. You are stronger than you can know x

Hi @KittyKatSmile, lovely to speak to you again, if I remember right you had a little girl at the start of the year? Hope you are all keeping well!

I've had so many things going round my head, did you use intralipids and pred/hydroxy and fragmin under Dr S' plan? I was told to do a pregnancy test at 10 days and if positive to book in for intralipids....I just wondered how soon after a positive test did you do the intralipids? I keep wondering if I had had them earlier if I might have saved the pregnancy (clutching at straws I know!) as I guess I was only pregnant for a few days.

Also does anyone know if youre supposed supposed to let the clinic know if youve had another loss or do you just carry on with the treatment plan you have? Xx

@Luckyducky2 hi, yes, that's right, good memory! I had pred and intralipids as well as clexane. I think intralipids after a positive test within about 3 days. I actually wasn't under Dr S when I got a sticky one, although I'd made sure my clinic would put me on the same protocol. The only different I really saw was that I actually had intralipids before a BFP as well but this was IVF so it was sort of in for a penny. I wouldn't have thought it would have made much difference when you had them; my clinic actually messed up and I missed one lot and obviously no difference.
Are you doing IVF? Which clinic are you with? How does it work with Dr S and his protocol?

Morning all!
@KittyKatSmile I remember you too :)
What clinic were you at?
It's was a BFN for me this morning 😑 the only good thing about a negative test is I look forward to a huge mug of caffeinated coffee and eat all the crap I want to for a few days!
I'm thinking ivf is the next stage for me too. I've tried gonal-f now for a few cycles and although one preg in May which resulted in mc I've had no luck since. I feel as if this dose altering each month or 'fine tuning' as Dr S calls it is just me being a guinea pig 😬
Aug - over stimulated so no trigger
Sept - good response but early trigger
Oct - no response still had trigger
Nov - who knows!!!!

Have a great week all! Xx

@HoldingOn2Hope I was with Zita West and I would wholeheartedly recommend them. I wanted to go somewhere that could both get me and keep me pregnant so I consciously uncoupled from good old Dr S once I'd found a clinic which would both mirror his protocol and take his test results (some wanted to charge me another £3k to (in my view) diagnose me with something I'd already paid £3k to be diagnosed with). They are pretty small so you tend to see the same doctors and they are all lovely.

Sorry about your negative test @holdingon2hope. That sucks. I'm not surprised you're frustrated. I wish I could advise you on the IVF side of things.

Nice to hear from you @KittyKatSmile. Interestingly, the month I got pregnant, I had ovulation intralipids as the steroids really didn't agree with me.

Dating scan all good today, due mid may, and harmony all back fine too. Feeling relieved. Thanks again to everyone's support. It means a lot.

xx

Congratulations @KtAgs that is wonderful news! x

Great news @KtAgs ❤️

Fabulous news @KtAgs ❤️ congratulations :)

I'm sorry to hear about the bfn @HoldingOn2Hope

I'm sorry for your losses @FruitandNut1 I'm just a bit behind you, I get my test results next week. I had my 4th loss in October.

I have been reading but struggling these last few days so not commented.
Just a quick question, Dr S said to take pregnacare plus omega 3 which I started last week (I was taking seven seas conception before this and no issues). I was expecting ovulation this weekend but have had no signs at all - no second line on my opks and my temperatures are a bit erratic and no shift yet. Obviously miscarrying in October possibly could be the reason, but my cycles returned to normal straight away after my other 3. The only difference this time is the change in vitamins - do you think there's a link or am I clutching at straws? I'm tempted to switch back to seven seas and just do the omega 3, has anyone else had issues with ovulation?

Hope everyone is OK xx

Hi @VenusStarr i reckon its entirely possible a change of brand could affect ovulation. And FWIW after my third loss, my ovulation was all over the shop and like you, everything had returned to 'normal' fairly quickly after my first and second loss. Xx

Hi ladies.

I had my 8 week scan today and found one of the twins died a few days ago. The remaining baby still measures well/good heartbeat but is at more risk as may pushed out by contractions from the miscarriage (or the lost baby may be “reabsorbed”, we have to wait and see what happens). I didn’t have any loss of pregnancy symptoms to suspect anything was wrong as I’m still pregnant of course.

I feel so incredibly down. I know we still have a chance with the surviving baby but this loss feels just as real as any other. It is our fourth loss in a row this year and, once again, after seeing a heartbeat and thinking/hoping it was going to be ok etc.

It’s also the first time since I’ve been on Dr S’s plan, although he did say he doesn’t think this will be from my NK cells so I assume it’s chromosomal (but with a baby remaining we can’t test to know).

I just want to scream and cry and have a glass of wine but I can’t because I need to stay strong for the surviving baby and hope it makes it. I think if it doesn’t, we will give up as I can’t go through this anymore xx

@HoldingOn2Hope I am sorry to your BFN. It's hard to remain positive sometimes isnt it 🤨. Enjoy the coffee and food, you deserve it.

@VenusStarr I assume seven seas is probably similar enough to pregnacare supplements...if so I would switch back and then can rule it out in case it is messing with your ovulation!

@KtAgs congrats re your 12 week scan, delighted for you.

@Rebecca9876 sorry to hear one of your babies didn't make it :(:( I have read lots of stories re second twin surviving and going full term. Fingers crossed this is the case for you.

Hello everyone,

@KtAgs congrats on your scan. Super good :)

@Rebecca9876 I am so sorry for your news today. I cant imagine how you must be feeling. It's so hard :( please, take your time to grieve for this baby as it will make you stronger to be able to hold on for the other baby. I recommend you read the book 'the Baby Loss Guide', as it will go through your grief day by day. I am so sorry. Hugs xx

@rebecca9876 I'm really sorry about your lovely baby. It's really positive news about your other baby but you also need time to grieve for your loss. I totally get you need a glass of wine. I think a cry is ok too - your mental health is important.

I don't know if this helps but I know of two people personally who have been in your shoes (was pregnant with twins and one died) and they have an 18 year old and a 10 year old. They both have different ways of celebrating their loss but it's very real and you have every right to be devastated. I'm so sorry. xxx

@Rebecca9876 I'm so so sorry for the loss of your twin. As the other ladies said, take your time and grieve the loss. The same thing happened to me in July and it was gutting. Even though I ended up losing both twins, my second one had a chromosome issue and I was told that in a huge proportion of cases, the second twin will just carry on and the body reabsorbs the other sac. If my second twin hadn't have had done thing wrong with it, I don't think it would have been affected. Of course you're going to worry, but there's also plenty of hope that the surviving twin will go on to be a healthy full-term baby!

@Whyisthistakingsolong I'm so sorry you had a disaster with the Humira! Did you call the clinic? What did they say? I was thinking that you should definitely insist on having the blood test to know where your levels are at after finishing the course. There's no harm in doing it, even if they can't give you any more Humira.

@KittyKatSmile I was recommended Zita West by a specialist midwife. I only had a little look into the clinic, which looks amazing and I was impressed that they offer 365 day care. I didn’t realise they offered the same treatment/tests as CRP hence why I went with Mr S. So glad to hear the plan worked for you. Congratulations ❤️

@Rebecca9876 I am so so sorry to hear your news. I too want to share a positive twin loss story with you for you to think about - a family friend lost a twin at 18 weeks, and carried the other twin to term. Cyclogest was given to her, so you’ll probably be on that to term rather than 16 weeks. I have my fingers and toes crossed that everything works out for you but please give yourself time to grieve too. It’s ok to be upset, ok to cry and scream. It truly is a terrible and heartbreaking journey, and unfortunately for us it’s one that’s stuck on repeat! Sending you and your husband lots of love.

@VenusStarr I just take plain standard FA and the omega 3 separate. When I took both pregnacare and seven seas I found I Mc’d earlier than if I took big standard FA. Now this may be (and probably is) a complete coincidence, but in my mind I feel better and reassured. So I think you’ll feel better on the seven seas, and they say reassurance is key to a positive outcome.

@KtAgs so pleased to hear all is well. Congrats again ❤️

@Jellystar23 @HoldingOn2Hope Zita West are doing an instalive tomorrow at 5pm with Q&A with one of the doctors. He's lovely, is the one who treated me and I loved him when he glanced at my test results from Dr S and said 'yep, ok, that's what we'll do'

@Rebecca9876 I'm sorry to hear of your loss. Loss is loss and you should grieve for your baby x

I am so sorry to hear of the loss of your twin @Rebecca9876 ❤️ sending you lots of love. You are allowed to grieve for your little one. Have you had any counselling? I'm having some through the charity Petals and that's really helping me, I've got a lot of unresolved grief. It's taken a while for me to find the right person, I've had counselling in the past and I actually changed counsellors when I had my recent loss as she just wasn't helping. But I'd recommend them xx

Thank you @KtAgs @LookingforAnswers86 @Jellystar23 I decided to switch back. Its only been a day so not expecting miracles. My temps are still up and down and I've still got pale brown spotting on and off. I'm seeing Dr S next week for my results anyway, so I can ask him about it. Its making me think I should try superovulation.

Hi @KittyKatSmile sorry was having a quiet couple of days there! Yes I've just done IVF with GCRM in Glasgow, unfortunately its like the dark ages up here and they refuse to follow any other doctors treatment plan (and don't believe in nk cells!) so I'm up and down to Epsom to get intralipids with Dr S, a 14 hr round trip each time! I read about Zita West, her clinic sounds amazing and I was actually following all her tips for the 2 week wait, I like her method with looking at stress, wellbeing etc and not just the science part!

@Rebecca9876 I am so sorry you have lost one of your twins, you must be beyond devastated there are no words to make it better but my heart truly goes out to you. Stay strong for that little one xxx

@VenusStarr I've taken both seven seas and pregnacare and found no difference? Although I had a successful pregnancy with seven seas when I had my little boy so do tend to gravitate back to that one! (Plus its easier to take with it being a smaller pill) xx

Thank you for the messages of support ladies, it really does help. As do the stories of positive outcomes for the surviving twin.

@Everhopeful35 so sorry to hear you lost twins earlier this year. We’ve chatted before about superovulation but don’t let my experience now put you off if you’re still considering - and it has still worked in the sense that currently we do hope to have a healthy baby at the end of it (which is after all what we went in hoping for).

@VenusStarr that’s a great suggestion thank you. I’ve found counselling incredibly useful this year during my other losses but that’s about to end as I’ve used up my allowance (!). So I will have a look at Petals. I’m a great believer in counselling, when you find the right person.

Thanks @Lalaifa for the book recommendation, I will take a look.

I really hope you are all doing ok, whatever your different situations xx