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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:
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Starshine1 · 28/07/2017 18:27

Drttc- congratulations! That is great news! Tough decision though on what to do next! i really don't know what I would do! I think possibly I would still book in with him- but a very tough decsision! Could you approach your gp at all? If they're forward thinking they might agree to adopt his plan? Thank you for your comments- that has really helped me. Fingers crossed the super ovulation works for me too!

Poppy- what an ordeal! Love that we were on your mind when you thought it was going to happen! Obviously means a lot to your DP too, his whole process, which is lovely you have his support. Enjoy your trip and fingers crossed for this cycle!

Oh Harriet- remember symptoms might be masked! Still hoping for u!

Signs are pretty bad for me- AMP came back as 1.9 today and only 3 follicles on scan yesterday. Have to think of the positive that I am still ovulating! And going to try superovulation, but also going to start seriously thinking about ivf- using own eggs could be an option, but I am not sure how much we can afford in terms of cycle and also I don't know how much I can take in terms of disappointments.

Starshine1 · 28/07/2017 18:29

Have a good Friday evening everyone x

PoppyJ1 · 28/07/2017 19:01

DRTTC - congratulations! Hurrah! It's great to have some more good news on this thread because we've had a lot of disappointments lately as you can see. Good luck with whatever approach you decide on.

Starshine, your excellent attitude towards this is the first step. You are still ovulating so your body still believes in your prospects, even if your mind is preparing for the worst, which is understandable, we all want to protect ourselves from disappointment. Super ovulation sounds like a great start and if it was me I would definitely be looking into IVF with own eggs before getting too serious about donor eggs. Surely that would cost loads more too?

Harriet, you are soo not out! Nothing surprises me about Pred; it seems to both create and mask pregnancy symptoms so I would not take any of the symptom spotting like breasts, etc to heart. Apart from the side pains because that really is a tangible thing. In my first pregnancy I had no symptoms whatsoever, although my hormones never got very high, and in my second only two breast twinges before BFP and I had higher hormone levels than normal with all sorts going on post BFP. It's too early to eliminate!

Seeking, hope you're keeping your chin up for now.

JustLa, I like the idea of a Facebook group with pics!

JustLa · 28/07/2017 21:56

DrTtc, congrats on not only your #1, but your BFP for a #2!
Like Harriet said, I personally would be anxious about going through the pregnancy without the meds if they worked for me before. Difficult decision. I will literally do and pay anything right now to ensure this pregnancy (8+4) is a keeper so I may be too committed to give unbiased advice, lol. And I also haven't had a complete successful pregnancy in the past so maybe that would help with the confidence in going solo? Def something to chat with DH about, I hope you come to a decision that you're both happy and confident with.

Star, sending thoughts and love your way. I'm so sorry you have another thing that's worrying you. Like we keep saying in here, it's difficult to imagine luck when we've had such shitty ordeals but luck is totally possible at any time 🌈
You can have eggs screened for healthy ones so you have that option if you're worried about the quality. I understand your concerns with the cost of IVF, do you know how many free rounds you get on the NHS in your area? Hopefully better than mine which was 1 when I checked.
I think it's a great plan to try the super ovu for a couple of months if specialist agrees (hopefully they can advise on how many tries of each you should take) and then think about IVF with your own eggs if your bank account allows. As everyone says, you just need 1 good egg to do the trick ⭐️

Poppy, well done on the successful boink! Will you try again? Hilarious that you were concerned about telling us. I get like that when I go for scans now, you all cross my mind as I want to help you all build confidence in this too, lol.
FB group has to be on the cards!

Great tip on eggs Tee :) Do you have long to wait for your TTC cycle in August?

Seeking, I feel your limbo pain and hope you're doing ok.

Harriet, yes pred will mask it! Was silly for me to ask actually as my boobs only got big and burny a few days after I stopped pred... went back to normal AF style soreness and still are after I started pred again. Interesting with the ovary thing, maybe like me, it hurts when it gets squished by a swollen uterus which could be AF or Bfp. To be honest, I understand totally why you're trying not to get your hopes up too much as I practice that a lot! It protects you a little from disappointment if it's not the right time but have to try not to get down either, it's such an emotional balancing act! Eyes and everything crossed for your test day, I still have lots of hope for you 😊

Xxx

Seekingmiracles · 28/07/2017 22:32

Oh star, I'm sorry you've been dealt such shitty news! But i definitely think trying superovulation is worth it. And perhaps acupuncture? My acupuncturist has helped a lot of ladies who've had low AMH results.

Poppy, well done for getting the deed done and high five to DH too! Now fingers crossed it's done the trick!

Drttc!!! CONGRATS! Were you ttc or was it a happy accident?? I can totally empathise with your situation and your thought process. The treatment plan is so consuming and it takes a lot mentally to go through it all, add a child into the mix and it all becomes tough! I personally couldn't risk going treatment free but I can see why you're thinking about it. You could still have a healthy pregnancy. If you feel you can deal with the potential loss of this pregnancy then I think perhaps you should see how nature works.
Mr S was less than impressed when I went in and told him I was pg... exact words were 'that's not good'. Thanks! Anyway now it seems he could be right. He would have liked me to have tnf alpha & thyroid tests redone pre-pregnancy.

I feel very disconnected from this pregnancy, like it's not actually happening to me. I have a hen do next weekend so if Tuesdays scan brings bad news I intend to get royally shit faced

harrietm87 · 29/07/2017 07:18

Morning everyone. I barely slept a wink last night as got really anxious about testing today, even though I was trying so hard to manage my own expectations.

Anyway, I've just done a FRER and think I've got an absolute squinter, but don't know if I've got line eye and/or am delusional or it's an evap line or what. I'm just lying here shaking like an idiot. What do you think?

Immune/NK issues - aka Pred Thread no.20!
OP posts:
JustLa · 29/07/2017 07:44

Harriet, lol!
Is this some kind of optical illusion? I'm feel like I can see a faint something but I'll look again and it's not there!
Are you 9-10 dpo? I got a BFN at 9 days, it's so hard to tell.

harrietm87 · 29/07/2017 07:49

justla I'm 10dpo! It's slightly clearer in real life than in the pic but yes, very hard to see. I should have waited until tomorrow as today is my 10th day of pred anyway, but going to a wedding later so thought worth checking whether I can have some prosecco. Will probably avoid now just in case!

OP posts:
JustLa · 29/07/2017 07:49

Seeking, I know exactly what you mean about being disconnected. Did you feel like that with your DC? I do right now, but I think I'm making the disconnection as a protection mechanism- probably as you are xxx

JustLa · 29/07/2017 07:51

I would say avoid I'm afraid! I had 2 glasses on 12 dpo after BFN and totally crapped myself about if when BFP came on 14DPO! Lol

JustLa · 29/07/2017 07:56

Do you have any different types of tests? You def need to do another tomorrow morning on your first pee whatever other results you get today, tests this early are hit n miss x

JustLa · 29/07/2017 08:00

Booze doesn't mix well with pred btw, another thing to consider x
I'm so excited!! Hope we get a positive later!! ❤️

Starshine1 · 29/07/2017 08:06

I can def see a faint line Harriet! Agree with justla- I wouldn't drink anything today and hold off re-testing until 2 days to give the hcg chance to increase. Fx! Excited for you x

harrietm87 · 29/07/2017 08:15

I've got a cheapy test somewhere I think, but surely FRER is the most sensitive? star you're right I should wait until Monday but will prob cave and test tomorrow. No symptoms at all apart from these mild cramps.

I wasn't planning on getting drunk today but wanted to be seen to have one drink at the wedding to avoid arousing suspicion (haven't told anyone in this group of friends about my mcs and they are all on preggo-alert with me as we got married last September), but I'll just have to be creative. I would never drink again if it would help this be a bfp.

OP posts:
Starshine1 · 29/07/2017 08:53

Are you going with DH Harriet? Or someone you can confide in? Just keeping switching drinks- of course with them knowing. Sadly I have done this on many a night out/hen do/wedding thanks to the joys of miscarriages. Reckon some people think I am a really boring drunk and others think my DH really can't handle his alcohol. Good luck!

Seekingmiracles · 29/07/2017 08:58

Harriet...fingers crossed!! I can't work out if I can see something or not. But really hope it is. Maybe just have one drink... it really won't make any difference at this point and if you hadn't tested you'd be none the wiser.

Just with Tallulah I had a gut feeling it was going to be ok. This time round I don't, maybe if I'd had good news last week I may have been different. I'm naturally a very positive person so this isn't a natural feeling for me but yeah it's a definitely a preservation thing. I felt really positive before my scan last week.

harrietm87 · 29/07/2017 09:09

I've just done the IC and there's a faint line there too! Actually more obvious than the FRER as it's definitely pink. Aaahhh! Not showing up too well in the pic (and excuse the dirty windowsill) but it's definitely there!

Immune/NK issues - aka Pred Thread no.20!
OP posts:
JustLa · 29/07/2017 09:21

Seeking, yes I understand. The scan you had that put you in limbo would totally do that. I don't have a gut feeling I'll be ok, I used to be so positive but lost it a bit since my losses. Hoping it comes surging back when I have a success. And hoping yours does too x

Harriett, this must be driving you insane! I don't want to give false hope but 2 tests with faint lines doesn't seem like a test glitch! Try to relax if you can, I like your idea of waiting 2 days Star, that would be sensible but I def wouldn't be able to resist retesting tomorrow morning - heck I'd probably test again tonight but I'm a bad example lol

Seekingmiracles · 29/07/2017 09:24

I can see the line on that one Harriet. So I'll whisper tentative congratulations 😊 fingers crossed this is your lucky, sticky one. X

Tee4me · 29/07/2017 10:27

Harriet, I can see a line on both! Eeekkkk!
So will you keep taking pred now? I was so surprised to hear that the protocol is to test at 10dpo and if bfn abandon until next ovulation... surely lots of people won't get a bfp at this stage even if they were successful. I already know I'll be reluctant to stop the pred at 11dpo, 'just in case' 🤔

PoppyJ1 · 29/07/2017 11:23

Harriet! I can also see lines on both! So agree with the tentative congratulations! Looking forward to seeing it confirmed shortly. Yeah dont drink at the wedding, not worth it. The risk is probably low with one glass but you will beat yourself up. Your note about never drinking again just choked me up, I know you've got your whole heart and soul in this. Can you drink soda water and if you get caught just say, yeah I will have one in a bit, or something?! Being vague can help!

Drttc · 29/07/2017 17:04

Harriet- congrats! That is without a doubt, a BFP!! Hopefully the wedding has served as a good distraction today and no one has paid too much attention to your drink intake!

Ah Seeking I can really relate to you. I completely understand the need to protect yourself by disconnection. We've now been on both sides of this (the miracle versus the sad ending). It's such a battle not only physically but psychologically.

You know, it's been hard for me to put in to words exactly why I don't want treatment- but I've thought about it and it's clear now. I believe that there can be different reasons for recurrent miscarriages. And with mine (recurrent chemicals) I firmly believe it starts at conception. I've jumped in a car for hcg testing the moment the strip turned blue so many times now. And when my numbers were rubbish from the start it always ended the same. Only one time (with my DS) did those numbers start out the way they should. And honestly, I think that by the time I was doing hcg testing I was on my way to a healthy pregnancy. So basically, I'm too late to do anything for this BFP. No steroid or intralipid is going to undo a chemical pregnancy. If by some miracle this is a strong pregnancy it'll work out. I wish I'd been on treatment from the start! Also, I think this only really applies to my type of 'issues' and it's not the same as it is for those who have recurrent miscarriages after making it to scan. I think we all know our bodies well enough that we have suspicions about what may be our key issues. So I'm not going to put myself and son through everything when I know it's out of my hands at this point :-(

JustLa · 30/07/2017 08:00

DrTTC - If you have a feeling or belief, sometimes you have to just roll with it. Like you said, we know our bodies and if you feel in tune with yours then do what you feel is right.
Is it NK cells you suffer from? My only thought is that you talk about your danger point being there right from conception, like that's when your NK's attack. Could they also attack later on down the line in a Healthy preg (I think they are active in general for first 12-16 weeks, then can't affect baby) or do you feel certain that it's only in the beginning for you?

Harriet- have you caved in and tested again?? I could def see a line in the cheapy test you did... looking forward to a big fat line!

Xxx

harrietm87 · 30/07/2017 08:41

Morning everyone. Yes justla obviously totally caved in and tested with both tests. The lines are darker and though still faint are definitely there. I'm 11dpo today I think - should I be worrying that they aren't more obvious positives?

I accepted quite a few drinks yesterday and then didn't drink any of them. I'm sure people will have noticed but no one said anything which was a relief! DH wasn't there - he's still away but back tomorrow - haven't told him yet! I expected to be ecstatic but actually I just feel terrified.

drttc that reasoning makes complete sense to me. I've never had my hcg numbers done, but my mcs all happened at different times (later each time which I think is unusual) - if I knew there was a pattern I'd probably feel like you. I'd still probably give treatment a go anyway though because I am a mad and desperate woman! But you have a lovely son already and I totally understand you not wanting to disrupt his routine. Are you going to speak to mr S about it at all? Or see the epu?

seeking I completely understand the self preservation thing. You are doing so well and being so strong. I am so hopeful for you.

Hope everyone else is well and thanks for your support xx

OP posts:
Drttc · 30/07/2017 08:42

Justla- I go back and forth but I do think I that have an egg quality issue. 1. poor FSH numbers 2. lower than normal for my age follicle count 3. Chemical pregnancies are pregnancies/eggs that never take off (theoretically because they don't have what's necessary to progress after implantation). I was dealing with terrible hives and had a bout of stress related alopecia at the time I met Dr S. These are both autoimmune related diseases which would explain why I had high NK cells. I've not had these issues for a while now so I feel like my NK cell activity has gone down. Lots of 'ifs' and 'feels' and 'believes' I know... But there's just something telling me I'm doing that right thing.

Harriet- hope you've had a wonderful time at the wedding!

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