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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!

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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 07:49

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

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!

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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 07:18

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:
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

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

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!

Starshine1 · 28/07/2017 18:29

Have a good Friday evening everyone x

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.

Tee4me · 28/07/2017 16:58

For ladies with egg quality concerns, have any of you read 'It starts with the egg'? I started taking Ubiquinol as a result of reading this. Lots of tips on improving egg quality and the notion that this is the priority issue in addressing fertility concerns.
Drttc, this is an amazing story. I often hear about women struggling so much with #1 then fall in effortlessly for #2. I hope you have a healthy pregnancy and that bean sticks and becomes a sibling for DS. I was the other way around, fell easily with DS and now struggling lots for his sibling. He will be 5 in September, I never imagined this gap when we started ttc in 2015. I'm hoping the complex plan & Dr S will work miracles for us x

Drttc · 28/07/2017 15:14

Hi Harriet! Thanks for the reply! Yes I did Dr S' plan last time. When I met him on March 2015 I'd had 3 miscarriages and no children. I had a 4th miscarriage on plan (complex treatment plan) June 2015. I never made it much further than 6 weeks or saw anything on an ultrasound. I then got BFN's for 6 months. I was so frustrated I then started doing EVERYTHING. Every vitamin (NAC, folate, ubiquinol, Wobenzyme...), went gluten free, no alcohol, no caffeine, acupuncture once a week, intralipds BEFORE bfp AND super Ovulation - which finally gave us our healthy pregnancy and son who arrived August 2016.

Even listing it all out is exhausting to me. I previously had terrible hives that I believed was linked to my aggressive autoimmune system, but they seem to have gone away (perhaps due to staying gluten free). This makes me wonder if my NK cells have calmed down. Also, I'm still breastfeeding my son and I don't want him to take in the steroids :-/ ! Thank you for your advice though. Will discuss further with DH :-)

harrietm87 · 28/07/2017 14:55

Hi drttc welcome back! And congrats! Did you have your son on Mr S's plan last time and are now considering not taking the pred/intralipids etc?

I have to say I'd be nervous about doing that if it worked for you before, but I don't have any children yet and don't know how I'd feel if I was worried it might affect an existing child. Then again, it's only extra time (and money!) consuming for the first 12 weeks (so only 8 weeks from now) isn't it? And your son could have a sibling?

Totally up to you of course. It's so sad for us that we can't just see a bfp and feel certainty/joy like other women. I saw an active thread yesterday where someone who just got a bfp was asking about cloth nappies and home births - oh to be so innocent!!

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Drttc · 28/07/2017 11:49

Oh my goodness! It feels like it's been so long since I've checked in.

Hello to all the newer posters -and I'm so sorry these circumstances are what bring us together.

Starshine- I'm sorry to hear about your low ovarian reserve. I never had mind checked and suspected I had an egg issue- my FSH was normal for a 40 year old when I was 28. I also had some other number that indicated my FSH number was actually being artificially suppressed. I did Super Ovulation the cycle I got my DS :-)

Seeking, Sunny, Rosa, Snoopy - wow! It's been such a journey since we first spoke on here.

Seeking I'm so sorry your scan hasn't matched up with dates. I only had one pregnancy make it to scan so can't really compare... But I do agree that through research we've come across all outcomes. I hope you're feeling as well as can be in this limbo (arguably the worst place to be). Sending you a big hug!

Rosa- I briefly scanned and saw you said something about believing you may have taken the trigger shot after you'd already conceived/ovulated. I'm a believer in the theory that in that situation the trigger shot (essentially HCG) can help strengthen a pregnancy for a woman with a history of RCM. I came across this idea on a blog of a woman who had multiple consecutive losses, then through super ovulation+trigger had 3 consecutive healthy pregnancies.

Snoopy AND Sunny - oh my goodness I'm so happy for you both !!! This is amazing and it's beautiful to see you're so close to having baby #2. It must be a dream come true (with its challenges I'm sure) to have made it here after fearing the worst just a couple of years ago. Absolutely inspirational.

As for me- I'm still thoroughly enjoying my little man. I'm so proud of him and frankly infatuated. Already getting lots of talk/questions about number #2 as there's been a big baby boom within our friends and family. My DS was the first grandchild and is almost 12 months- yet last month the 3rd grandchild was welcomed in!

Full disclosure, I got a BFP this morning on CD25 (no idea what DPO). We 100% want #2 and would be thrilled if this resulted in a healthy baby. But I haven't been on any meds or vitamins. Our social diary is FULL with really meaningful events and I don't see how we'd be able to jump through all the hoops with did last time while taking care of DS - he's wonderful but very demanding. I'm not ready to go through the effort only to face the heartache from before. I know that a BFP doesn't actually mean anything with my history (this would be BFP #6). Before 6 weeks I don't think is 'real' with my body. So I'm thinking about just seeing what nature has in store? Taking the regular vitamins (started today) and waiting things out while enjoying DS. Would love to hear any opinions.

harrietm87 · 28/07/2017 11:47

Well done poppy and your DH! What a relief! I am SO glad I don't have to have an orgasm when we have sex - think the pressure would be too much for me!

9dpo today and don't have my hopes up. Boobs are definitely not sore despite a lot of prodding and a workout video involving jumping this morning! Still have the crampy feelings but I think they are just normal for me now. I've bought my FRER to test tomorrow just in case (going home to my mum's tonight as have a school friend's wedding tomorrow) but think I should start accepting I'm out now so I don't spend the whole day feeling sad!

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PoppyJ1 · 28/07/2017 10:47

"*give it a go, ok"

And I mean "collapsed" from exhaustion, not actually fainted!

PoppyJ1 · 28/07/2017 10:45

Starshine, what a bummer. I'm really sorry to hear this. Was it an antral follicle count and did it have to be on a particular cycle day? Apparently these things can vary throughout the cycle. How low are we talking, there are several categories from what I understand and some have more success than others and different clinics have different opinions. Apologies if this is too personal!

I totally agree with Harriet; you only need one egg. Can you do the kind of IVF with your own eggs that screens for healthy ones? There are widespread concerns at the mo that too many women are being pushed towards donor eggs too quickly. I don't want to be dismissive, I'm just thinking it might be a drastic decision if you're not convinced about it. Good news is if you were to use donor eggs you have plenty of time to decide because you wouldn't need to worry about your own age and fertility timeline.

Almost had drama last night. Looked like DP wasn't going to be able to finish! I was so upset and he said "ok spill the beans, there is a lot going on in your head right now!" So I blurted out that it was my last fertile day and I didn't know when we'd try again due to his travelling. Turned out, a couple we are very close to had just been through MC at 11 weeks. The poor wife is still in the UK getting it dealt with. He had gone for beers with the husband, his colleague, that eve and it was emotional and they'd drank too much and it affected his performance. So after a break he said "right just give it a ok" and then we managed and he collapsed afterwards. I was so full of love for him for that! So fingers crossed. Beforehand I was sitting on the bed thinking "how am I gonna tell the Mumsnet gals we didn't even manage it, after all that!"

Starshine1 · 28/07/2017 08:17

Thanks Harriet. Well he said he does have success with superovulation and low reservoir ladies, but no actual figures- kind of didn't feel that optimistic. Jus don't understand why I have it- no risk factors and no genetic factors. Rotten luck!

Yes going to give superovulation a couple of months and have a real think about ivf and save up! Nice to know you didn't have any side effects.

Two days left to test? Hope you're feeling ok xx

harrietm87 · 27/07/2017 22:47

Aw star I was just thinking about you and checked back in to see if you'd posted. Please don't be doom and gloom! The good news is you've found out now and you can take steps to address it. You just need one egg.

What did mr s say about prospects with superovulation? I have to say I didn't have any side effects with the drugs and it was much easier to time sex (or it will be next time when I know what to expect!) so fx that works for you. Also good news if he thinks your other mcs were caused by this as it means as soon as you get a good egg you should have no problem carrying the baby to term?

Re donor ivf - surely no need for you to rush to decide that - worth a few cycles of superovulation first while you're thinking about it. You are still young and you've got time.

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Starshine1 · 27/07/2017 22:39

Safe flight poppy and have a fantastic time!

Don't think woo muchabout the lack of sore boobs Harriet- remember pred can mask the symptoms!

Low ovarian reserve confirmed today. Start superovulation next month and really have to have a serious think about donar ivf- weighing up whether we will be happy as a family of three or whether we should try ivf. I really don't know what the answer is. DH is happy to support with either decision. I think poor eggs is probably the reason for all the mc and I am really annoyed that it's never been checked before. I can't believe st Mary's haven't didn't check for it either and if we hadn't seen mr s- then would not have this diagnosis for probably another year or so. Just seems so wrong.

All a bit doom and gloom here

harrietm87 · 27/07/2017 19:36

Lol justla boobs feel totally normal (sadly). I've had left sided twinges before as well when pregnant but also had them last cycle when I wasn't so just goes to show it's meaningless! I did ovulate from my left side this time and when I had my scan my left ovary was massive (like three times bigger than the right - Mr S didn't seem concerned...) so maybe I'm just noticing it squeezed in there now!

star how are you?

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JustLa · 27/07/2017 16:30

Happy holiday Poppy! Have a fantastic safe journey, I really hope you have a wonderful time and have tonnes of fun DTD! Perhaps we will make a fb group at some stage and would love to see the pics, I've got the wanderlust bug so love seeing first hand encounters of different places. Good luck!!! X

Harriet... twinges on the low left? That was an early sign of pregnancy for me, everyone's different but it could be! How are your boobs, do they feel hot??? (Omg that's such an awful question but important)
Sorry, I think I'm enabling more obsessive symptom spotting lol

Xxx

harrietm87 · 27/07/2017 15:14

Woohoo poppy! Safe flight and good luck! Your DH won't know what hit him! I think your CM sounds promising. Mine never seems to coincide exactly with ovulation anyway.

8dpo today and symptom of the day is creamy cm. can't remember whether I get that normally or not! And still have twinges on the left side, though not as bad as yesterday. Just have to get through the next few days without losing my mind!

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PoppyJ1 · 27/07/2017 14:11

Hi all,

Sorry this is going to be rushed; I'm on the runway! Thanks for all your encouragement about my trip and fertile potential! DP isn't going to know what's hit him this eve. Had a little bit more EWCM today which is very encouraging, but not as much as yesterday…still it’s earlier in the day than when I saw lots yesterday. Some creamy cm too, which spooked me, but I have had that with EWCM sporadically throughout so O may not have happened yet. Willing the process to happen slowly but not derail itself!

Seeking, you sound like you're coping so well. So sorry you're going through this; I have my fingers crossed and still believe there is a very good chance all is well. If you have no other worrying symptoms it has to be a good thing. When I had similar news from a scan (2.5 days behind what mine should have been on the day) I started bleeding within about 16 hours of finding out. Agree you look lovely in that pic and pregnancy suits you well!

Starshine - please remember all these FHS, AMH, follicle scan things are primarily markers for response to IVF and other stimulation. They are less important in natural fertility and that is a hard fact. I am pretty sure that info came from the British Fertility Authority or similar named org. Do let us know when you have updates and try to think positively!

Tee - agree with Seeking, the Pred will not artificially sustain an unhealthy pregnancy; it's to stop the cause of MC that ends healthy ones. There is nothing anything or anyone can do about chromosomal ones. So you can definitely cross that concern off your list! In answer to your question about healthcare, I am with Bupa but it doesn't cover my issues cos they're linked to a congenital endocrine condition and congenital is excluded from my policy. I was on the NHS but now I pay a private endocrinologist so I can be seen more often. I've only spent a couple of hundred on consultations so far and a similar amount again on private scans in my last pregnancy.

JustLa - I love your moon-face botox thing! Haha! Hope you’re feeling ok despite the emotional responses…I cried at Annie the other week and I’m sure that was the Pred’s doing so can only imagine what it’s like with pregnancy hormones on top! Thanks for the doggy tip, DP would thank you if he could.

Harriet - how’s the phantom O pain situation? I am so willing to bet it’s corpus luteum related and potentially a very good sign!

Sorry for the points/people I have missed in this post, I am doing a frantic catch up on what I’ve missed, with take-off fast approaching.

Love to all and speak soon x

Amy2017 · 27/07/2017 11:01

Ahh seeking that pic is so beautiful! I had a similar reaction to harriet when I saw it. Top article, thanks for being part of it. Talking about these things publicly really helps other women.

Tee - I've also been wondering the same thing about the drugs pro-longing unviable pregnancies. I'm still feeling so much trepidation about the treatment; wondering if there's actually other issues wrong with me; wondering if I can just focus on chilling out, healthy eating, yoga, mind-health and make this all happen naturally. I may give myself another month to get used to the idea before I take the plunge. I'm waiting to hearing about my egg count, so if that's low, perhaps that'll be the catalyst I need to get rolling.

Starshine - good luck with the scan today! Sending all the good vibes.

JustLA - a good sob is very cleansing. I did a bunch of it yesterday and feel very light today as a result. Get it all out ;)

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