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

960 replies

harrietm87 · 18/07/2017 11:42

Hi all, thought I'd get the ball rolling on the new thread.

Welcome all with immune/natural killer cell issues.

It's been a while since a new thread so thought it might be helpful if we all added our stats:

I'm harriet, age 30, TTC#1.
3 mcs (2 at 5 weeks, 1 mmc at 9 weeks).
Hypothyroid and high NK cells.
Cycle 2 on pred!

OP posts:
Thread gallery
14
harrietm87 · 25/08/2017 20:26

luna are you me?? I had terrible recurrent utis at uni and a really serious kidney infection. Ended up in hospital and on antibiotics for 6 months! Last had one about 5 years ago so was gutted to get one first time on pred!

I ended up going to the out of ours at 2am on a Saturday night. Oh the plus side was pretty quiet, and as soon as I got them it stopped hurting pretty much. So glad you are going tonight - well done your DH. If you have conceived (fx!!!!) it won't be a problem at this stage. Get well soon xx

OP posts:
LunaB · 25/08/2017 20:43

Thanks babes! God what a nightmare for you! I was an idiot at uni didn't realise the signs and ended up in an ambulance (erm twice) - kids eh!

Tee4me · 25/08/2017 21:25

Oh Luna what a bugger!! Well done for getting plenty of bonks under your belt though! Good luck with your app and hope it clears up ASAP xx

LunaB · 25/08/2017 21:54

Broken by the Boinks

Tee4me · 25/08/2017 22:19

I definitely had a bad case of battered foof last month too!! 😂
Do you lie there for ages after in an attempt to 'keep it in'? I used to try and lay still/hips up for about 30mins after, but I've given up on that now. Think going for a pee soon after should keep infections at bay? The best swimmers will be well on their way anyway x

LunaB · 25/08/2017 22:42

Battered here too 😂😂 and yes I lie practically on my shoulders, legs sticking in the air, for aaaaaaages - then don't pee until I'm about to burst in case I lose one of the troops... not again tho! Silly me!! All ok - doc confirmed UTI and prescribed antibiotics... ah well...

JustLa · 26/08/2017 07:47

Oh no Luna! You poor thing xx
UTI veteran here, I've have an operation (didn't work) and have been on so many things. Drink lots of water, don't let the hot water bottle get too close to your hoo-hah. I used D-mannose. A type of sugar that prevents e-coli from sticking to urethra walls. Not sure about this in preg and ttc though.
The advice I have Harriet to avoid it when TTC was lots of lube to minimise rubbing and doggy style boinking to also miniminise eurethra rubbing.
By the way... if you google anything + miscarriage, there always seems to be some ass telling you it causes it! Ugh!
Get well soon lovely xxx

Seekingmiracles · 26/08/2017 07:53

Hope the antibiotics kick in soon Luna and you're feeling better in no time! UTIs really suck! Only ever had one but fuck me it was horrendous... so I feel for those of you who are recurrent sufferers.

Hope you all have lovely things planned for the bank holiday weekend.

JustLa · 26/08/2017 07:53

Poppy, Aussie in December! How exciting. Hunter valley? Or another wine region? Think there's one in Melbourne and one in Adelaide. I've been to Hunter a few times and love it ❤️

Harriet, how are you feeling?? How many weeks are you now and when is next scan?

Tee, sorry you didn't get your BFP this month- it's so hard being us, when things don't go perfectly to plan it feels like they actually went wrong! I'm sure it will come in next couple of months 😊

Seeking and Drttc, are you both feeling well?

Hope everyone else is doing ok

Xxx

JustLa · 26/08/2017 07:56

Oh Seeking (or any other pred preggy veterans) how was coming off pred for you?
I'm taking 1 less tab every 4 days so off them in 16 days total. Seem steep?
And also, I'm MASSIVE! Like, 6 months big (at 13+3) normal? 🤞🏻

harrietm87 · 26/08/2017 08:16

well done luna I'm so glad you got the antibiotics. Hope you feel better soon! Mine cleared up quickly and then I conceived next cycle!

I don't think it's good to hang around after sex. tee is right - the best ones are always well on their way by the time you get up so go straight for a wee! I've always done that cos of my history with utis and never had any probs getting pregnant.

Hi just wow so jealous you're nearly done with the pred - how have you been feeling - better or worse?!

I'm 7+2 today. The only symptom I've really had is extreme tiredness and bloating that gets worse through the day - thanks pred and progesterone! I've had the odd wave of sickness if I haven't eaten for a while but otherwise ok. My happiness from monday's scan has worn off already - starting to feel nervous again and counting down the days till my next one, which is nhs one on Wednesday at 7+6. DH is working away again so think that's prob why - don't have his voice of reason!

Hope everyone has a fun weekend ahead!

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JustLa · 26/08/2017 08:24

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

JustLa · 26/08/2017 08:27

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?

harrietm87 · 26/08/2017 08:31

Ha I'm such a sucker for mr s - was going to tell him I didn't need his scan with my next intralipids (at 9 weeks) in an effort to save money because I'm also having NHS ones, but then chickened out! I'd prob still have the intralipids if I were you just, even though you probably don't need them!

I think once I get to 12 weeks the NK fears can stop, right?! I've also got hypothyroidism but just take thyroxine for that and it's fine. Don't have any sticky blood stuff like I think you do? What does that mean for you?

OP posts:
JustLa · 26/08/2017 09:27

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 ⭐️

harrietm87 · 26/08/2017 10:09

You should definitely ask mr s about it just. TBH I can't imagine having an enjoyable pregnancy, and I don't mind either, as long as it results in a baby I'll take it!

Just read this article which I think we'll all empathise with - brought a lot of sad feelings and memories back:

https://www.theguardian.com/lifeandstyle/2017/aug/25/after-three-miscarriages-im-becoming-jealous-and-resentful-of-my-pregnant-friends?CMP=ShareiOSAppp_Other

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LunaB · 26/08/2017 10:32

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! ❤️❤️

Tee4me · 26/08/2017 11:12

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

Seekingmiracles · 26/08/2017 11:41

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??

BeanDotSprout · 26/08/2017 11:51

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 Sad

Many thanks in advance for taking the time to read.

LunaB · 26/08/2017 12:02

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??

LunaB · 26/08/2017 12:07

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 💓

BeanDotSprout · 26/08/2017 12:13

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?

Tee4me · 26/08/2017 12:39

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!

LunaB · 26/08/2017 13:04

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!).

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