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

(961 Posts)
harrietm87 Tue 18-Jul-17 11:42:37

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!

LunaB Tue 18-Jul-17 12:07:12

Hi!

I'm barbara, age 35, TTC
Have 1 son aged 2.5 - naturally easily conceived (possible cause of NK?)
2 mcs since - both before 6 weeks (1 missed @ 9 weeks/ERPC)
NK complex cells - starting treatment next cycle with Dr Shehata
MTHFR homo gene mutation

LunaB Tue 18-Jul-17 12:08:03

Oh yeah and fed up and hate doctors

harrietm87 Tue 18-Jul-17 12:14:13

Ha ha luna agree with that sentiment.

I got pregnant while on the pill when I was 23 and had a termination, which may well have kickstarted my NK issues. Sad to think of it now but nothing I can do. Was so not ready to have a child then and had only been with my boyfriend 3 months, though he is now my DH!

Mr S says that pretty much all of his NK patients have been pregnant before.

LisaSimpsonsbff Tue 18-Jul-17 12:36:51

Hi all! I've had a bit of a look through previous thread and I know that most of you are Dr S patients, but I was wondering whether anyone had had the testing done at Coventry? I'm thinking about it and had a couple of questions. Thanks!

PoppyJ1 Tue 18-Jul-17 12:37:34

Hi Harriet and Luna, is this a thread to replace the one we must have maxed out recently?!

How do we find all the gals who were on it, just hope they know to check the conception board?!

Anyway here's me:

TTC no1, aged 35, with mild CAH (endocrine condition that carries slightly higher MC risk)
1 chemical pregnancy at 4w1, 1 incomplete MC at 5w4
4th cycle on Pred
Excellent ovarian reserve for age
Negative for antiphosphilipid

Snoopysimaginaryfriend Tue 18-Jul-17 12:37:38

Thanks for the new thread harriet.

Hi luna. I replied on your other thread as well.

These m.solgar.com/SolgarProducts/Folate-800-mcg-as-Metafolin-Tablets.htm
Are what I used. Pricey but a trusted brand

Starshine1 Tue 18-Jul-17 12:56:34

Hi all,
Thanks for starting the new thread Harriet!

I am hannah- soon to be 37!!
One MMC then my DS who is almost 4
TTC 2 years now with two MMC picked up at 12 weeks and then one at 10 weeks. Two 5 week miscarriages

Just finished 4th cycle MrS treatment for borderline nk cells.

Having the scan harriet and tests as fears over my ovarian reserve! Am petrified it's going to be bad news and last month the dates didn't work with my holiday so had to postpone. Have had two scans before, one at st Mary's and one at my local hospital, where the ovulation dates didn't match up with the scan images so mr s wanted to take a closer look. Trying to look at it that if it is ovarian reserve the sooner I know, then the sooner I will have to come up with a different plan! Not that I know what that is right now.

Accupuncture def helps with my relaxation poppy and it's nice to have some me time! Have heard reflexology is good too. Your commute to the clinics sounds bad too! Are you still able to work from home?

Welcome Luna! This is a lovely supportive board to be on. Sorry for your losses, but hopefully you'll be lucky now

harrietm87 Tue 18-Jul-17 14:07:07

Oh starshine fx your ovarian reserve will be fine - 37 is young! When is your scan?

I've been googling all the measurements and stuff from my scan, really for no reason, just kind of amazed at how complex and mysterious our bodies are. Weirdly I really enjoyed seeing my ovaries on the screen - strange to think I'd never seen them before!

Sorry I didn't spot we were at the end of the last thread - is it possible to edit posts to add a link to this one? Hopefully @bala and others will find us!

PoppyJ1 Tue 18-Jul-17 14:32:19

Starshine, whatever the result of ovarian reserve, please try to keep an open mind. As I prob lamented on the other thread, I had a private fertility doc tell me six months ago when I had a scan after an incomplete MC that I had low "ovarian volume" (apparently small ovaries for my age), indicating very low ovarian reserve. He said I shouldn't even wait three months to TTC again. Then I had another scan to check MC was complete which showed my ovarian volume was bigger than he had said (6.8 ml vs his 4ml) and finally an AMH measurement with my NHS endocrinologist which said my reserve is "excellent" for my age. I was distraught for weeks and it was all codswallop. Also, the midwives who did my second scan said they knew nothing about ovarian volume and think a lot of the fertility terms are over complicated and serve only to scaremonger. So, fingers crossed for an encouraging result but please don't stake everything on it at this stage!

Starshine1 Tue 18-Jul-17 14:42:24

Ah Harriet and poppy! Just your nice words have made me feel better- all be it probably short lived as my mood is so up and down lately! I didn't realise that poppy- I knew you'd had you're ovarian reserve checked, but had no idea, you'd been told it was low in the past.

Harriet I would be reading into everything too!

Hopefully scan can be booked for next Thursday - need this af to arrive before I can book. Due today. So now imaging signs of pregnancy and temp was still slightly raised this morning- but I know I am not, deep down. Will do a frer if it doesn't show by tomorrow and temp isn't still up.

PoppyJ1 Tue 18-Jul-17 14:52:46

Starshine, if you get a BFP tomorrow I'm going to laugh my head off! After the little whoops of joy all round.

JustLa Tue 18-Jul-17 15:48:06

Hi 😊
Thanks Poppy for helping me find the thread πŸ™ŒπŸΌπŸ™ŒπŸΌ

My intro- So I'm 38 years old.
Started trying 5 years ago, had a chemical MC at around 5 weeks. Took a break... fell pregnant again and had a MMC which completed at around 11-12 weeks, another break then Feb this year had another MMC and opted for D&C at around 10-11 weeks.
Both pregnancies stopped developing at around 6-7 weeks.

Went to Mr S and got positive for high NK and very High antiphospholipid (sticky blood)
Am now 7 weeks pregnant on Mr S complex plan taking prednisolone, cyclogest, heparin, aspirin and some other vitamins etc and I got my first ever positive scan yesterday 😊 Still a long way to go as my Blood condition is dangerous throughout whole pregnancy but, my first check point was hella positive!

Welcome Luna and Lisa smile sending good luck vibes out to you!

Star, you ARE still young. I would like 2 children ideally (all going well) and I'm 38 hopefully progressing with my first πŸ€ My husbands parents had children later on as they struggled to conceive and they were the most amazing parents for it and managed to stay young at heart. A good ovarian reserve is comforting but not the be all and end all, and you're so right- the sooner you know, the more steps you can take to protect your future chances!
I am still working from home, although Dr S didn't seem to approve of not going in to work, or my questions on injection techniques to minimise bruising... I think he expected me to be tougher! Lol
I still have my fingers crossed for a bfp, it happened to me when I thought there was no chance smile

Harriett, I can't remember anyone with a pink t shirt but I was there between 3pm and 3.45!! Small world 🌍 I was the one with long blond hair, floral trousers and a crazy anxious look on face.

Poppy, how are you feeling today?

Hope everyone else is doing ok and manages to find us here

Xx

sunnyday01 Tue 18-Jul-17 15:48:24

whoa! - I don't pop in for a few weeks and the thread has gone crazy - so many new people and posts!

To all the newbies on here, sorry you find yourself on here but i found this thread a massive help when I was going through it. I found it comforting that other people were going through the same emotions and feelings, esp when all my friends seemed to be getting pregnant and having babies so easily!!

Rosa - lovely to see you back on here. As an only child I had a great childhood and honestly thought Toby would be an only child too. But saying that, do you think its worth giving it a shot and seeing what happens?

seeking - so lovely to see you on here and to hear your news! its funny how some of us old timers who had such trouble last time have found ourselves getting pregnant relatively quickly this time!

snoopy - so close now, although life sounds a bit chaotic - hopefully baby no 2 gives you a couple of weeks for things to settle down!! lol.

My history is 2 m/c one 1st at 8 weeks, 2nd at 5/6 weeks. Saw Dr S, at which point hadn't had a bfp for nearly a year, took another 6 months and super ovulation to get a bfp, sadly mc at 5 weeks again. Added hydroxy in to the mix but stopped SO. Also stopped the pred for a couple of months to give myself a break from it, got a bfp which stuck and took pred from bfp. DS1 born in Jan 2016. In Jan 17 found out I was expecting again - wasn't on any drugs as it was a bit of a surprise. Took it all from a couple of days from bfp apart from hydroxy and here i am at 28+6 with DS2! I'm just waiting for my mum to get here to take me to the hospital as i've had reduced movements over the last 24 hours. With my first pregnancy i was paranoid about every symptom, lack of symptom, and very anxious - i think it is to be expected after what we have been through. I honestly felt i had been pregnant for abut 2 years by the time my son was born as the days just seemed to go so slowly. This time I haven't had so much time to concentrate on being worried about whats going on, and been much more what will happen will happen, but i still now get bouts of anxiety about it all going wrong.

JustLa Tue 18-Jul-17 15:51:53

Ps- I meant my fingers crossed for a BFP for you Star (and anyone else testing of course) ... it read like I was hoping for another one myself which would be confusing

JustLa Tue 18-Jul-17 15:59:39

Great news on your pregnancies SunnyDay!
I understand exactly the paranoia you're talking about, especially with our histories. With everything that we have been through, you can't help but think you're destined for failure. But you've had one lovely child and are so close to your second, which is awesome.
Good luck on your appointment today ❀️

harrietm87 Tue 18-Jul-17 16:38:45

Ah justla I must have just missed you! I arrived at 3.30 but wasn't seen until about 4 - maybe you were holding me up lol! I did scour the waiting room and there wasn't anyone blonde there. What a lovely experience the scan must have been - I can't imagine ever getting there myself.

Welcome back sunny - so lovely to hear positive stories. Congratulations on both pregnancies!

PoppyJ1 Tue 18-Jul-17 17:14:30

JustLa, I am fine thanks. And thanks for your lovely long message on the other thread which I didn't manage to reply to! I am so, so happy for you and you are absolutely entitled to allow yourself some relief and hope, if you can manage to at such a nerve-wracking time.

Yes, my fear of blood came as a result of my incomplete MC. It's only if I see drops of it during AF, I just start crying because it looks like what happened shortly before the MC. I'm sure it will get easier, it has only been happening since TTC again recently; I always manage to convince myself I'm pregnant every cycle hmm

LunaB Tue 18-Jul-17 20:19:12

Hi ladies!! What a load of beauties you all are!!

Good god I never even heard of egg reserves - I'm totally naive...

I'm still in total denial this is all happening and after 2 miscarriages in 4 months, now these diagnoses and the upcoming treatment I can safely say 2017 can F-off!

Sunny, what a slog you've had and what wonderful results! Hope the reduced movement is just lazy baby - my son barely moved the whole time and I spent daaaaays on the Ward getting him checked - the little menace!

I'm glad I found this group! I've spent months reading posts from like, 2004 πŸ™„, and desperately wanting to ask questions or connect with these people who were long gone!

flowers

JustLa Tue 18-Jul-17 23:45:17

Harriet I think I probably did hold you up!! Was chin wagging for too long, my head was all over the place, lol.
It was a great idea to give our intro's again as I had never seen them before. Have been so moved by reading everyone's, with my raging hormones plus the extra progesterone pessaries and pred, my heart is actually physically aching thinking about the pain it's caused you/us all and not many people will ever really have to understand it (thankfully). Looking forward to a time when it's a distant memory for us all, while we enjoy our families ⭐️

Poppy, I'm so sorry it's affected you in that way, it's heartbreaking. It just adds to the trauma of it all, I hope you are able to manage it with the help you're getting. And thanks for your lovely words again, I keep trying to rein myself back when I'm feeling too hopeful- self preservation.

Luna, I'm so glad you found us too! I know exactly what you mean, I tried searching in date order and the posts are still all from 2009 etc! There's still time to turn this dodgy year around- Politically, it may be a lost cause, but we aren't!! Lol... hopefully it can un-f-off for everyone sooner than later

Xxx

harrietm87 Wed 19-Jul-17 14:10:25

justla that's so sweet. It's sad that so many of us are going through this but comforting to know we are not alone!

I'm trying to work out if I've done enough with timing and sex. I had the trigger shot at 5pm on Monday. Mr S said that ovulation would occur 36 hrs after the shot and to have sex yesterday and today. So 36 hrs from 5pm Monday was 5am today, and we had sex at 10pm last night and 1pm today - 7hrs before ovulation and 8 hrs after - is this ok? Is it enough? Not sure whether to try again tonight. Wish we had on Monday night as well but I just blindly followed my instructions!

How are you doing star - have you tested yet?

Seekingmiracles Wed 19-Jul-17 15:38:38

Lara 33
4 mcs (2 before 6 weeks, one blighted ovum at 9wks, one chromosomal loss at 8+6)
1 daughter, Tallulah- 9months
High nk cells, pro-thrombin gene mutation.
Currently 5ish weeks pg with (hopefully) #2

Sunny, so lovely to hear from you!! Did you see Tryings post? She's pregnant too!!
Hope everything was ok with the reduced movement, it's so worrying isn't it!

I'm currently sat having intralipids #1. And being fleeced of yet more money for liver function and thyroid checks.
BUT I have managed to get my gp to prescribe my steroids so think once I've had intralipids #2 I'll ditch Shehata.
Shame healthcare at home don't do it anymore hmm

LunaB Wed 19-Jul-17 15:54:49

Dr S has me on on the intralipid things until 16 weeks... sneaky - I can't ditch him shockshock

Got my GP to prescribe all the meds, but I feel tied into Dr S as GP made it clear I'm not their problem envy

PoppyJ1 Wed 19-Jul-17 18:52:37

Harriet, according to most schools of thought, you have totally done enough!

OPKs and most TTC guides say having sex the day before ovulation and the day of ovulation are the best days to have sex. So you're spot on! I think the thing about having sex after O day thing is to cover you in case you ovulate late. Even if you ovulated a day late, you're still covered by your second session as "day before O day." :D

Starshine1 Wed 19-Jul-17 19:25:21

I agree with poppy- reckon you've DTD at exactly the right times and you couldn't do anymore! Does the trigger shot increase chance of fertilisation or just stimulate ovulation? Fx for u Harriet!

Af arrived today! Felt quite controlled doing the temp as my temp dropped today. However I did keep imagining I felt sick for the last few days and constantly prodding my boobs πŸ˜‚. Have booked my scan for next thurs and having blood tests this week, so at least then I will find out about ovulation and ovarian reserve! But being more zen like thanks to your comments ladies.

How regularly do you need the intralipids Luna? I work in an antenatal clinic once a week and was speaking to one of my obstetric friends about it all (he has been brilliant for advice and support and luckily meant all my frequent use of epu locally has been fantastic)- we both concluded that RMC and fertility problems are a mindfield - no conclusive evidence and at the end of the day we do what we feel we have to hoping for that rainbow. He knows mr s and does think he is a nice guy - if that helps at all!?! Also I know we have to pay lots for it! But at least it feels like he cares and we are doing something - I saw st Mary's RMC in may for tests- they expected me to wait until sept for the results (so in theory they expect me not to ttc in this time). I have complained and I asked for the results to be sent to me as there should only be a 6 week follow up wait- today I chased it up and got and email letter back with the results- basically say all is normal but they still want to see me in sept to discuss the treatment plans- which I am sure will simply be aspirin! So having seen that am so thankful to have the option of mr s.

Hope all is ok sunny?

And justla? Was thinking about what you said about mr s and your work- remember you need to do what's right for you and if that's working from home, that's what you need to do.

Have you booked a date for your trip to see DP poppy?

Really sorry for the essay ladies!

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