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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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14
Seekingmiracles · 26/07/2017 21:19

Hi ladies!!
I'm feeling surprisingly ok about things today. I know it is very early to have seen a heartbeat but I keep thinking back to my last two pregnancies when we saw one at 5+4. Any way this pregnancy is different. We'll see how it goes. I've read so many stories over the years, I know it could still turn out ok, but I think after our losses we're programmed to think the worst and prepare for it.

Hope you manage to jump DH in time poppy!! Fingers crossed!
I spent months before doing the Sperm meets egg plan and failing to get pregnant. This pregnancy and last we dtd on day of positive opk and day after.

Amy welcome to this wonderful group. I think you're definitely on the right path. Try not to worry too much about the side effects, they're all worth it in the end.
I was very lucky in that the steroids didn't effect me too much, just gave me moon face and insatiable hunger! They can also mask symptoms so don't worry if you don't have nausea/sore boobs, I didn't with my successful pregnancy and as yet I don't with this questionable one.
That article actually features me Blush.... I'm the fat preggo one in the stripy dress! The lady who wrote it was also a patient of Dr S and (hopefully) has had her twins by now!

I think we spent about 5k with tests and treatment and a loss on plan when ttc Tallulah.
Consultation and scan is £250, done every two weeks, steroids are about £40 I think, intralipids £300. It can all add up quite quickly. But again... so worth it.

JustLa · 26/07/2017 21:23

Amy I know what you mean about not taking meds. I never take pain killers and I'm still eating organic foods where possible, using hippy deodorant and plant based cleaning products.... then pumping myself full of these chemicals 😂 but it's tried and tested so have to put faith in Mr S's success rates.

Forgot to mention, physically I'm not very robust, allergic to many things, bruise, burn and am sensitive to side effects generally so I think you will be totally fine
Xxx

Tee4me · 26/07/2017 21:42

Seeking! How funny that's you, what beautiful bump! Your face doesn't look very moony to me 😆 You look utterly radiant x

JustLa · 26/07/2017 21:45

Seeking, I'm so happy you're feeling ok.
You're absolutely right, we have all learned to expect the worst #PregnancyCatastrophists!

That was a great article and you look so beautiful in your stripy dress.

Roll on Tuesday so you can see what's going on, I have everything crossed for you! Xxx

I'm off to to sob over Davinas 'Long lost family' show because, well- sobbing and being over emotional is one of my fave hobbies at the mo!

Xxx

harrietm87 · 26/07/2017 21:51

Ah seeking you look absolutely radiant in that picture. I had actually read the article before but skimmed through it again when Amy posted it and your picture actually made me well up a bit at the thought that could be me some day!

starshine good luck for your appointment tomorrow - let us know how it goes?

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Tee4me · 26/07/2017 22:08

Couple of quick questions that have been circulating in my brain, and wonder if anyone has any insight or thought to ask Dr S?:

  1. I understand taking the steroids means our bodies are less likely to attack/terminate pregnancies. Obviously in some cases our bodies do this because the pregnancy is not fully viable or there are genetic issues. This plan doesn't trick our bodies in 'keeping' pregnancies in error does it? God, sorry that's a bit of a morbid question 🙈 It's just I'm realistic that sometimes MCs are natures way of sorting this stuff out, and I'm conscious we are interfering in that process. I wish I'd have asked Dr S about this, I'm sure he would have a reassuring answer!

  2. Did anyone start off paying privately, then once diagnosed switch to private health cover?

Starshine1 · 26/07/2017 22:22

Hi all,

Sorry have been on a frenzied google mn infertility search! Have convinced myself that tomorrow will get the bad news, that actually the miscarriages are also due to my egg quality and that here is very little chance of us getting pregnant again, let alone not miscarrying. I know I should wait for tomorrow's scan- but there is too much information at our finger tips now.

Poppy- how exciting about your trip! Have a wonderful time! Enjoy and I think it's sounds like you'll just get in there for your FW.

Harriet- so close to testing for you! Hope you're holding out ok.

Glad you're doing ok justla, I think being emotional and pregnant after miscarriages is completely normal.

Welcome Amy- lots of the ladies have already given you good advice- at research into ivf and donar eggs (have gone nuts over drive) I think other countries are also testing for nk cells a lot more readily than the uk. Also the dose of steroids is very small and as the others have said their are side effects, but quite a few minor, reversible ones.

Seeking, I am glad you're getting on ok, well as well as you can be at the moment. Have my fingers crossed for you.

Tee- our private health cover doesn't cover for this and in terms of the first question- I believe the treatment can prolong a miscarriage- particularly the cyclogest (which is why lots of centres don't use it- pros and cons for it)- but i am pretty certain that if their was something wrong with the foetus mc would still occur in the first trimester.

Sleep well all

Seekingmiracles · 26/07/2017 23:17

Oh you're all very kind, but I def had a fat face... it had calmed down a bit by that point though. Weeks 8-14 were very moony! Lol!

Tee the pred won't trick your body into keeping hold of the pregnancy if it's not meant to be. Cyclogest can possibly by keeping your progesterone levels up, but generally most people who are going to miscarry will do so regardless. Hope that helps.
Can't answer your other question as I paid privately the whole way through, not heard of many insurance policies that cover it either.

Starshine1 · 27/07/2017 06:37

Seeking I agree with the others- you look beautiful in the article and if you had a moon face earlier on, it had def gone by then

JustLa · 27/07/2017 08:36

Good luck for today Star!! ⭐️ Let us know how you get on and I'm sure it won't be as bad as you're expecting xx

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 ;)

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

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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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 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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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 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 · 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

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!"

PoppyJ1 · 28/07/2017 10:47

"*give it a go, ok"

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

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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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 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 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 :-)

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

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