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

[harrietm87]

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!

Harriet- Just saw your post! Congrats on the lines this morning. What's your game plan from here?

If I make it that far- I'll book a scan for 5 weeks+4 days to see if there's anything in there. That's when I saw DS' heartbeat last time. However, the time before I went in at 6 weeks and it was completely empty in there! They feared an ectopic and I almost had to have a tube removed (just in case), but then I miscarried naturally. I hate this process and all the bad memories...

Don't really have a game plan other than throw myself at the mercy of mr s and hope for the best! Will keep going with the pred. Started the progesterone yesterday (didn't start taking it earlier after all), and think I need to book in for intralipids but can't remember when that's supposed to happen - does anyone know? I'll tell DH when I see him tomorrow night I think. Still no symptoms really which makes me a bit worried.

5+4 is super early drttc - when will that be?

Harriet the intralipids are asap, ideally 4 weeks- I had mine st 5. I'm in with Mr S again tomorrow for my mayonnaise drip, I'm like you, throwing myself at his mercy and just getting as much free stuff from NHS as possible to make me feel better about the money I'm burning lol x

DrTTC, totally understand your thinking there. What did you really object to about going through the plan? Did you get crappy side effects from the Pred?
I feel for you, that you're re-living memories. I'm not coping brilliantly at the moment as keep thinking it's gone wrong and I'm going through the bad stuff again every single day at some point, which is exhausting- I'm so happy you have your DS, so at least you know you can totally do it and it's worth it ❤️

This is all sounding very promising Harriet! Symptoms wise I definitely wouldn't worry. I didn't have much with DS until 12 weeks. The first minor thing I noticed was beyond 4 weeks (after missed period); my skin was slightly hot to the touch. The timescales on testing is very tight isn't it? Can take 7-10 days to implant, and what if you ovulate a day later than you thought?
First lipids are at 4 weeks, so I would ring first thing tomorrow if I were you!

Harriet- 5+4 would be in about 2 weeks. So roughly the equivalent of about a millions years or so away? Oh wow how exciting to tell DH tomorrow! Can you remind me of your history? As for symptoms they're sooo unrealiable. With DS I had zero symptoms until nearly 6 weeks- then the morning sickness hit! And I had several bad bleeding episodes. Also pred is known to mask symptoms. With my other chemicals I never made it to morning sickness but varied from no symptoms to sore boobs/fatigue.

Justla- we're traumatized by what we went through for DS. It was without a doubt the darkest time in our lives. We just aren't mentally prepared to go through that and drag DS through it too. It's been a surprise pregnancy, and considering we feel it's too late to fix it if it's a bad egg, we aren't going to let this hurt what we already have. We gave everything for DS and will never take him for granted. I completely understand giving your all when ttc #1. That said, we are willing to go guns blazing for #2 when we can do it from the start.

How far along are you btw?

So excited for you Harriet! Fx all goes well x

drttc I've had 3mcs. First at 4 weeks in Feb 2016. We weren't trying, put it down to bad luck and decided to wait until after our wedding. Then conceived first try in Jan this year, mc at 5 weeks, then conceived again immediately, mmc discovered at 7 weeks but had stopped growing at 5.5weeks ish (gestational sac and yolk sac but no fetal pole), MVA at 9 weeks in April.

So I've never had trouble conceiving but never seen a heartbeat. I've got hypothyroidism, v high thyroid antibodies, a normal NK cell count but they are very active. Had all the tests in May and this was my second cycle on pred.

Guess you're not too far ahead of me then - lol at a million years!!! Certainly feels like it. You can only do what you think best and then you'll have no regrets.

I'm so sorry Drttc, I had no idea it was such a rough time for you both and I understand why you feel the way you do. I bet you treasure your little miracle x
I will be 9 weeks tomorrow, it's a long road ahead if I'm fortunate enough to make it all the way 🍀

Star, I hope you're doing ok?

Xx

Drttc - I completely get where you are coming from and I really hope this is a good egg for you and does work out ok. My nk cells were borderline so I really don't think the miscarriages were down to nk cells, just old eggs. Started ttc again when 34 and feel very angry this has happened so early on but very grateful that we have DS.

I am doing ok thanks justla. I have decided that we will try superovulation, but am not really holding out much hope. I am going to stop temping, will still track ovulation for super ovulation, but then we will admit defeat and just focus enjoying what we have. Will definitely do the cliche thing and get a dog next year.

I think I am going to take a bit of a break from mumsnet- will be checking in ladies to see how you're all getting on. Really hope these are sticky beans for you justla, seeking, drttc and Harriet! Poppy I hope hat the timings have been right for you whilst away and that you are having a lovely break!

Will check in soonish ladies- thank you for all your support xx

Starshine, your message sounds very measured and accepting. I wonder if that is really the case or whether you are (understandably) putting on a brave face, to an extent. Either way, I admire the way you put things across so matter of factly and always with that bit of underlying humour. Perhaps there is something to be said for taking a break from the monthly anxiety, heartache and disappointment. It could be that if you do, and accept the situation as it appears, you find you get pregnant again in time anyway. Flipping this on its head, women are still advised that if they are not seeking pregnancy they should use contraception until menopause. I wouldn't be surprised if you "admit defeat" and find that things fall to place when you're in a different head space and it's a welcome surprise. And worse case scenario you're a lovely family of three (this is uber fashionable in the suburbs of London, btw 😉) with a lovely dog. Anyway, lots of love to you, and thank you, it's been great interacting and I still have faith in your prospects of having a DC2. Glad you will be checking in x

Completely understand star, this world of end and immune issues can become very overwhelming and all consuming. A break away from the stringent routine of things will probably do you the work of good. I hope we see you back soon with some good news. Wishing you lots of love and luck as you continue.

Drttc- I think you're doing the right thing for your family right now. I pray that your little bean is a strong and sticky one. Sending lots of positivity your way Hun.

Harriet I'm glad your line is darker. Try not to worry about how dark it is. My advice would now be to stop testing. It only brings more anxiety. Today you are pregnant. Book your intralipids and take each day as it comes. Each day that passes your little one is getting stronger and your chances of mc are going down.

Oh star I will miss you on this thread but completely understand your feelings about this. I hope you are ok and I really hope superovulation works for you. You don't even need to track ovulation with it because Mr S does that for you - you will have a scan to check follicles after you've taken the medication and then you will be told when to take the trigger shot based on how your follicles are looking. Makes it really easy to time sex as well. I have so much hope for you and will be thinking of you.

I've booked in for my intralipids this week. Feeling a little nauseous and boobs a teeny bit tender but not bad, and could actually all be in my head.

justla congrats on making it to 9 weeks! When is your next scan?

seeking I'll be thinking of you for tomorrow xx

Hi all, how are you doing?

DrTTC I've been thinking about your predicament and have to admit my endocrinologist did say Pred from BFP could be too late to change anything, although to be fair my endocrine condition (mild, non classical CAH) is different to most of the issues other women are taking it for. No one knows exactly why women with my condition MC more often, just that Pred reduces the risk significantly. If it was me I would probably opt for a low dose anyway (I'm currently on 2.5mg twice a day) but I see your point.

Harriet, this is all very exciting! I bet the breast tenderness is related, it can happen very early!

JustLa, congrats on 9 weeks! Big milestone.

How many of you know about temping? I just started this cycle and made the mistake of 1. Not starting in the morning and 2. Not getting a specialist BBT thermometer.

Full disclosure; I am 4dpo and nuts if I think I can deduce anything but still furiously symptom spotting. What I can say, though, is that mid morning on O day my temp was 36.5, I have had mixed measurements over the past few days, generally 36.4-36.5 in the mornings and 36.6-36.9 in the afternoons. Today I woke up with 36.7 (highest morning temp so far) and now it's 37.1! Is there something wrong with my thermometer or is this a good sign? On Fertility Friend my chart does look like a mix of pregnancy and ovulatory charts. I have creamy cm today and crampy legs yesterday. I've had tender breasts and cramps since O day and at 1-2 dpo the breast pain was very pronounced . I do this every month but this is all a lot more pronounced. I'm getting a progesterone measurement taken at 6dpo in an ex pat clinic to see if the docs back home can work out what's going on with my luteal phase. Any thoughts?!

Hi ladies!

Lush news Harriet!! I've been taking a break - was getting v scared about what's in store as starting my complex treatment in next 2 weeks...

Anyway, head out of the sand...

Got to drive home from work now, but look forward to reading back to see what everyone is up to

Poppy I used to temp. A few points to remember-
1.You must only take your temp as soon as you wake up. Your general movement after that will affect your BBT so your chart may not be accurate.
2.Get a specific Bbt thermometer- more accurate.
3.You won't be able to tell much until just before you're due on. An ovulatory chart will show a significant rise the day after ovulation, it should then stay up. It will dip normally the day before af arrives.

1. So at 4dpo a good rise just means you've ovulated, it won't indicate pregnancy yet. But obviously it is possible that you have indeed conceived.

Good luck poppy. I have never temped - sorry! - but sounds good!

luna don't worry about starting treatment - it's definitely a good thing!

seeking will be thinking of you tomorrow.

Thanks, Seeking! Really useful info ☺️ I will continue with it this cycle and then decide whether it works for me or whether it is just encouraging further analysis, of which there is already too much!

Will be thinking of you tomorrow with my fingers crossed.

Thanks Harriet, any further updates on symptoms or doctor feedback, etc?

Thinking of you today Seeking xxx

Thanks for the support, ladies. It seems like an odd choice to make, but I just know it's right for us.

🤞🙌🙌❤️ Seeking!!
And I agree Drttc - I'm always tempted to have another natural go...

For our ever growing pregnant gang - I assume you'll go ahead with a regular 'booking in' appointment with your midwives at 8/9 weeks? My GP said it's vital to do as you'll be referred to an NHS consultant who will take over your care after we leave DrS @ 16-weeks (and in general they'll keep a second eye on you from now)...

For those who started the steroids, how many days after you started did you feel any symptoms? I have an optional work sailing day on day 5 after I start and I'm wondering if I should make my excuses and say I can't go?

Star- it's been so lovely chatting to you on here, I understand why you need a break from thinking about these things all the time. Please pop back when you're ready and let us know how you're getting on. Dog sounds fab either way! I hear so many stories of people who have fertility struggles and end up getting a puppy instead, then out of nowhere -hey presto- bun in the oven! I have a cockapoo and recommend totally. No hair shedding, mine doesn't smell of greasy dog either, very practical! All the best xx

Seeking- I'm guessing you're feeling quite nervous (I'm terrible before scans), my thoughts are with you and really hoping for a good outcome for you 🤞🏻

DrTtc- that's what matters the most, you have to do what feels right for you. Your mental health is what's most important here, so do what you feel comfortable and confident doing

Thanks Harriett and Poppy, I made it through my 9 week scan. The Hb seemed high at 190 but Mr S didn't seem worried. Intralipids went perfectly this time, my veins behaved!
Harriet I'm so excited for you! Have you done any more tests? Drink plenty of water leading up to intralipids (just as precaution) it was very rare but my veins collapsed on first go at 5 weeks and couldn't take the whole thing. This time I drank loads and was perfect. I always get chatting to the other girls in the room which is nice. I'm guessing your first scan will be at around 6.5-7 weeks? So you've carried on with the pred, taking cyclogest too now? And obvs folic, vit D, omega 3? 😊

Poppy- I'm so sorry I don't have any knowledge of temping, I'm no help at all I'm afraid! Luckily it looks like seeking has you covered there :) 6 days until you can test! I so hope we see another little line 😊

Luna- it's really not bad at all. Some odd little side effects, but nothing we can't handle! My worst symptom is worrying, so the drugs are nothing really in comparison 😊 Lol

I have to call my midwife clinic today, one or the lovely ladies at Mr S's clinic is pretty sure I'm suffering from PTSD style symptoms, I think she's right- how annoying! But hopefully this means I can find a way to stop going through all the emotions of thinking I'm losing almost every day... exhausting!

Xxx

Hi Luna,

Yes I saw midwife at around 8 weeks and she has referred me to obstetrician who will hopefully be in contact with me soon.
I don't remember side effects really kicking in. I was on holiday on my first lot of pred and had a whale of a time (apart from not drinking lol) I went on a massive hike, loads of ocean swimming and snorkelling, I got a little tired and shivery when I came off them after thinking I wasn't pregnant but that was it xx

Thanks again ladies! I think I'll (annoyingly) need to tell my GP around 5 weeks - only because with DS I held off until 10 weeks and they couldn't get me a nuchal scan (so I had to pay £200 for a private one).

Justla- so glad to hear about your good scan!! Heart rate can vary so much, such as if mum is nervous (which I'm sure you were).

Thanks for the tips justla - will make sure I drink loads. I'm not looking forward to it tbh - I usually feel faint with blood tests etc so bit worried about staying conscious! And congrats on your scan! Sorry you are still so stressed out. We probably will never stop worrying.

I don't really have any symptoms yet other than feeling exhausted, thirsty and a few crampy twinges. It's still so early though - I'm only 3+4! I told DH last night when he got back from his travels - it's his birthday this week so I got him an early card and put a FRER inside it. He cried when he opened it bless him. Trying really hard to manage our emotions - swinging from elation to fear and back again.

My first scan is at 6 weeks on 18 Aug. DH is away again for 3 weeks on the 20th and I want him to be there, so booked it in then even though it's early. I will need his support either way if we make it that far.

luna I think everyone is different but I didn't have any side effects from pred that stopped me carrying on life as normal. The only thing I've had is extreme hunger and bloating! I've put on quite bit of weight already. But my sleep hasn't been affected at all, and I haven't had palpitations or felt "wired" which I think are also common. I would assume you could go on your work thing no problem.

Thanks JustLa & Harriet on the advice! And I'm really sorry you are suffering with such trauma JustLa :( I'm trying to enjoy these last 2 weeks where I'm not 'trying to get or stay pregnant... of course I'm worrying about the worrying to come,

Good idea to get a scan earlier Harriet, although I'm sure 6 weeks is just about ok to get some reassurance - I'll be waiting outside the sonographers room at 5+7 :)

Never did any charting at all [yet] poppy... but these tips you're getting are good! Plus the tips re the intralipids!!

Did you not fancy getting the docs/midwifes involved early on Drttc?

I actually did buy a puppy, 3 weeks ago... to make myself feel better! And she's certainly taking my mind off all this as she shits all over the house 😂😱