Immune/NK issues - aka Pred Thread no.20!

Stupid hair? Tell us more! Bet it adds character and charm. People always ask me about cutting my DS's hair, he has crazy blonde mop of curls and I love it.
Anyone else suffered with indigestion after starting this medication?! I've literally been bed bound this afternoon with stabbing pains in my breastbone. Definitely indigestion as quite burpy too. Was eventually sick and now my whole stomach area is aching and I don't feel like eating at all. I would say AF arrived to add insult to injury, but having had the BFNs, it was very welcomed in the end! I know my cycles are clockwork as I'm a day early having ovulated a day early too.
No more currys for me! Might need to ask Dr S to increase my dose of Omeprazole! Weird for it to affect me now 5 days after stopping the Pred, but I guess the steroids continue to work as a few of you have mentioned the cumulative effect?? x

Oh shame Seeking. I'll look out for a dodgy do then and say hi to any stranger with a poor hair cut 😂

Bean, sorry for your losses. I don't think (as far as I'm aware) the uNK cell test covers activity which is why Mr Shehata does the blood test.

I'm just having a scan just so won't be joining you in the mayonnaise room 😂
I'll be the one with the DH with stupid hair! Haha! Also sporting a fairly sizeable tummy considering I'm only 10+4... I think it's more fat than baby though!!

JustLa, it's amazing how total strangers can come together online to support one another. I feel so much stronger having posted on a few threads and read some very positive responses. You seem like a really lovely bunch on here

I'll delve a bit more deeply into what the uNK cell testing actually entailed. Just checked the letter and it definitely refers to cell count only.

I've had all the standard recurrent miscarriage tests but I'm going to query all of those too as they totally missed thyroid at the time so that was done later. It's always made me wonder if anything else was missed or not carried out as robustly as it could be. I may ask for repeat testing because of this and the issues with my son's postmortem. I'd then be starting from a clean slate.

I'm taking folate rather than folic acid and have also made dietary changes such as cutting out alcohol and caffeine among other things. Been doing this since May (after being put on high dose folic acid until I had the results, and which I now understand isn't the ideal protocol).

Have any of your partners had the MTHFR test?

When a new person pops up, it reminds me what an incredible bunch of women I share this space with.
Strong, intelligent, resilient, dedicated, kind and loving. Those are qualities which make the best mothers in the world- and I'm sure you/we will all be just that.

Much love (must be having a hormone surge today 😂)

❤️🤜🏻🤛🏼💪🏼⭐️

Hi and welcome Bean,
I'm so sorry for what you're going through, it's so awful and there are only a handful of us the really understand what it means to have multiple losses xx
I think many of us use the research strategy as a way to regain some kind of control and a feeling we are doing something to stop this happening again.

3x Mc's here (2 were missed) 5/6 weeks, 11 weeks and 9 weeks (both of the later ones stopped developing at 6-7 weeks)
I then went to Mr Shehata in Surrey and am now 13+3 and seems to be going well 😊
I have high nk cell count (not that aggressive though, just loads of lazy murderous assholes hanging around) and antiphospholipid syndrome which is a blood clotting auto immune thing. I'm sure you've been tested for this, but if not you should be.

Seeking, you've literally warmed me all the way through! Thanks so much for letting me know about your heparin and clotting condition. I'm at the clinic at 2.30!! Are you having intralipids??? I'm in for drip n scan. Would be fun to see you in the mayonnaise room. You'll recognise me by my 6 month looking bump 😂

I'm Homozygous as both parents carry the gene, and I'm A1298C...

Tee, thank you, I've been in touch with the clinic to query the uNK test results. What MTHFR mutation do you have?

Luna, which mutation do you have?

Yeah I hear ya Tee... I do think tho that siblings are at their best as adults... and by then a 20 year old and a 26 year old will be practically the same...

Interesting Bean... I think you should deffo check the behaviour of your cells. My doc tested 3 things: the amount NK Cells; How aggressive they are in general & What they do when I'm pregnant (kill kill kill!!) - so I had 2/3 bad things, aggressive by nature and super aggressive psychos when they sniff out an embryo! (I'm visualising them as an attacking army!).

Oh bless you Bean, I'm sorry you're going through this. I can totally relate to the research thing being a coping strategy. I don't know anything about that particular mutation, but like Luna I had a normal amount of NK Cells, but they are highly aggressive, so it's definitely worth asking for analysis of their behaviour.
Luna we started TTC when DS just turned 3, naively thinking it would happen immediately and we'd have a 4 year age gap, enough time for DS to bond with his sibling before starting school but independent enough that baby could command a lot of my focus. Well I'm now looking at a 6 year age gap so not exactly expecting them to play together anymore, but having a little helper will be a bonus I suppose!

Luna, thanks for your speedy response. I had my NK cells tested privately, and it was a uterine biopsy, not blood, but I'm not sure how exactly they tested the tissue. It was confirmed that my uNK cell level was 3% but there was never any mention of the aggressiveness so perhaps that's something I need to run by the clinic?

Tee, he's only almost 3 - and I didn't even want a second until he was 3+ as I wanted to enjoy him lots! But I've had a lot of comments about 'time for no.2' etc etc.... makes you want to scream IM TRYING FFS 😝😝

I'm potty training this weekend... so at least when no.2 comes along I will have a school age, potty trained DS and then can enjoy precious little no.2 properly :)) - our boys can be our assistants looking after the newborn 💓

Hi Bean, welcome and very sorry of what a nightmare you're having.

I also have the MTHFR gene mutation, and also swapped to Thorne prenatal with 1000mcg Folate... re the cause of miscarriage - depends what you read! Some say it's totally the reason, others say maybe, most gave no idea what the issue even is!!

I too had a perfectly normal 1st pregnancy and was shocked to keep miscarrying when trying for 2nd child. My tests showed I had totally normal amount of NK Cells, BUT they were super aggressive and when my doc replicated a pregnancy under the microscope my cells went insane - hence the miscarriages now... NK Cell issues can be triggered by a birth so that's why I'm likely affected now.

My doc did say that the NHS does not look into the behaviour or NK Cells... so if I'd gone NHS they never would have found how aggressive the cells were, as they would only look at the amount I had... maybe this is the case for you??

Hello ladies, I hope you won't mind me joining.

I'm currently going through my fourth consecutive miscarriage in 14 months. My first pregnancy was healthy and uncomplicated. Since June 2016 I've had losses at 16, 4, 6 and now 8 weeks. All NHS tests were normal as was karyotyping and uNK cells. I did however test positive for one copy of the C677T gene mutation but it was suggested that this isn't a proven factor in recurrent miscarriage. Still, I made some dietary changes and swapped folic acid for folate in a natural food-based prenatal before this most recent pregnancy.

I'm just wondering if anyone's understanding is different? That there is a link with the heterozygous C677T mutation?

Finding it hard to accept what we're going through and my coping strategy seems to be research

Many thanks in advance for taking the time to read.

That's how I weaned off last time just. It is scary but also a relief when you dot have to take the daily tabs! As far as NK risk goes, you're out of the woods.
I also have a thrombophilia - pro thrombin gene mutation, so I'm on fragmin too. You will be classed as high risk but actually that risk if you're on the drugs is very small. The risk is at its lowest during 2nd trimester but creeps up again in 3rd and is quite high after birth. You become the main concern over baby at towards the end. You'll probably have to continue with the fragments until 6 weeks post birth. I'd well and truly had enough of the injections by then.

Harriet - they're sneaky at the clinic, they won't do the intralipids without a scan! I asked for my last appointment as Mr S was away, said I'd have a scan locally but they said I had to be scanned. I think a lot of it is pure money making to be honest.

I'm also at the clinic on Wednesday just, 3.30pm. What time are you there??

Luna how how is your DS? Mine is 5 next month x

Recurrent UTIs, NK Cells, Sticky Blood... jeeez, aren't we all fine specimens 😂😂😂

Dr S told me I come off the Pred and finish with him at 16 weeks, the final intralipid being at 16 weeks £££😩 But I'm going to do as he says... don't care about the money or the stress of a worrisome pregnancy, like harriet, we all just want that boooming baby at the end of it all!

I'm fed up of being told off for 'leaving it too long' between DS and next baby, that I'll ruin any chance of sibling bond with a big age gap bla bla...

I'm reall glad the group preggos are doing SO well, despite of all the worrying! We are a greedy gaggle of scan addicts!

And I'm glad I'm in good company with my TTC girls 💪💪🙌🙌🤞

Thank you all for UTI tips and sympathy! Deffo no more sperm capture tactics for me anymore! Those little critters are being peed out ASAP after 😱😝

Hope everyone enjoys the glorious weather we have been promised for the bank holiday weekend! ❤️❤️

Me too, I'm pretty sure I pay for plenty of things I don't need! Don't mind, as long as I have my little squidger 😊
Yes I have sticky blood. Mr S said I have like 99% chance of good preg after 11/12 weeks scan but I don't know if he forgot I have sticky blood. He's never taken the time to explain what it really means for me in later pregnancy. I don't know how much security the drugs give me but have been reading studies that appear to make it look like I'm at a pretty serious risk all the way through, such a bummer. The blood can clot in placenta right up until birth. Hoped meds totally sorted it but think they only partially fix it. He i don't think he will be there on Weds but really want to talk to him about it.

You should be able to start enjoying your preg after around 14-16 weeks which is fab!!! ❤️ I met a lady during intralipids who had already had a mr S baby and we on #2- she said she really started enjoying pregnancy at 16 weeks. Not sure if this will be possible for me, but so glad that at least it is for you and hopefully the other preggies in here ⭐️

Oh and I've only been on 4 tabs for 3 days so don't think I'll feel anything yet?
Once you're off the pred Harriet, do you only have normal preg worries to consider or will other issues still cause you concern?

Harriett you're doing so well! 😊 The scan-joy does wear off quicker each time... ugh.
You're well on your way now and so close to 8 weeks.
I think small meals throughout the day works well, the bloating is chronic!
Dr S scan on Weds with intralipids for me although I'm questioning whether I need it now I've boosted forward, I'll be 14 weeks.

And yes I agree, get up and have that tinkle pretty sharpish after DTD, esp if you're sore. And drink lots to flush the nasties out

Xx