Immune/NK issues - aka Pred Thread no. 22!

[HappyApple05]

Helllooooo dearies

Opening this new thread looking for a light in the tunnel during my journey towards conception. Would be nice to walk along with people in the same journey. To cut my story short, 3 miscarriages and referred to Mr.S, diagnosed with high NK cells and lupus positive, already on levothyroxine. After 2 weeks of staring at the med pack, I have now finally started on Aspirin, Vit D and Pregnacare plus. Awaiting Ovulation to start on Pred protocol.

Miscarriage history:

1. July 2017 - In my 12 week scan, found foetus with no hb (6 weeks foetus size), devastated! Had severe morning sickness, didn't predict anything negative. Took my son (6 years then) to the scan planning to break the surprise where he could see his sibling in scan.. We all broke down, opted d&c

1. March 2018 - started bleeding in 6 weeks and miscarried naturally.

1. July 2018 - spotted in 6 weeks, scan at EPU no pole, returned when 9 weeks along, still nothing, opted d&c

Bought the ovu predictor kit for the first time, counting days to use it. Any of you in the same position? Would be great to hear your stories and cheer each other up towards the destination. Previous threads were beautiful, so supportive but sadly the latest post was in Sep 2017. So most of them would have crossed the bridge. Decided to start on a fresh thread.. So here we are....

Looking forward to catching up... Take care you guys.... Plenty of baby dust to everyone

@Sunshineblonde1 awesome news hun.. Very glad to hear about the scan results. And appreciate your post about the spotting, thank you :-)

@Chickjen Don't worry hun. Make use of this waiting time for your physical and psychological well being (pamper yourself, yoga, meditation, exercise, healthy diet etc). You will be on track, waiting for the whistle. Once you get on the journey, then finding time for yourself will get trickier.

@Nixwix Fantastic news Wow.. It feels really good to hear all the positive stories.

Update From Me: No good news yet but started a fresh cycle yesterday. So here comes my next chance :-) Keeping up with exercise, plenty of water and fibre. So getting prepared.... And just so you know, I'm, on Levothryoxine 120mg.

Plenty of baby dust and sticky vibes,
HappyApple
XOXOXO

Best of luck for your next BD'ing @HappyApple05 !! Some strategic boinks to be had this month ! When is your next follow up with Dr S/Epsom?

@Chickjen how did the house move go?? How are you feeling?

Love to all!

x

Thank you @Sunshineblonde1. Exactly! I need to work on the timing I guess. I just had my follow up. Next one is due in 4 months time.

Thank you @Sunshineblonde1 @Chickjen @HappyApple05 !

I agree @Sunshineblonde1, the next few weeks are the most important. Like you my first mmc happened around 8-9 weeks so I know I am not out of the woods yet. So totes understand you feeling nervous yet optimistic. I am actually quite calm which surprises me, minus the random outburst of tears lol. Good pointer on the up hill walk! I'm going to try that. Any progress with wedding planning?

Thanks for enlightening me @Chickjen . Did your cysts go away naturally? I'll be sure to check my Tsh and have my Levo adjusted accordingly. How did the house move go? Hope you settle in well.. Must be exciting!

Good luck @HappyApple05 ! Are you on any tracking app to help you figure out your ovulation dates? Flo is quite good! I used the clear blue opk - they are quite useful although both the times I got pregnant naturally I didn't use them - tbh didn't even plan those..

Hope the others are doing well!

@HappyApple05 @Sunshineblonde1 @NixWix Hi Ladies, thanks for asking, the move was chaotic and stressful, the new people's movers turned up at our old house before we had finished, and at the same time BT turned up at the new house to fit the phone line! The new house has been empty for quite a while and needs lots of updating and maintenance, we have already had to unblock the drains and have no hot water at the moment, but we are in and it is an excellent distraction 😀
I have kind of blocked out Dr S for the moment, it is too much to think of at the moment, I think it's all the appts that worries me most, having to organise it with work etc. I started taking N Acetyl recently and I think it's changed my cycle, I was ovulating really early at around day 10 and its day 12 now and still no sign, im wondering if it might be a good thing and it has crossed my mind to try one more time before starting the protocol, but maybe i am just finding excuses to delay it.

@NixWix yes they just resolved themselves, the next time I went for a scan they were gone, although that was a few months later with the next mc so I'm not sure how long they took to go.

So true @nixwix, the 8-10 weeks are another critical milestone as that is when any DNA missing information plays out which can stop the little one growing. So everything crossed for the next two weeks. Although I think If I had gone for IVF I would feel a bit better than I do as I would know that the most viable egg and sperm had been chosen. So that must be of comfort to you. I'm a bit worried about potentially having dud eggs! I am intrigued to see what shows up on my scan on Monday!
Wedding plans in full swing. One last venue to view on Sunday, just as a comparison but my mind is pretty set ;-) My OH is saying I can chose the venue if he can chose the house hehe! Fine by me. He has good taste in that department .

@Chickjen wow that is quite the adventure in your new home and a great little project, which really is a blessing in terms of a positive distraction. Life does go on, and beautiful things happen along the way . The appointments are a bit of a pain and he gets SO ridiculously booked up, I only just about got all my dates booked in up to 16 weeks in advance. They are pretty full on once you get the BFP but hopefully it works the first time round, are your work understanding?

Tell us more of N Acetyl - that's a new one for me! Is it a powerful antioxidant? What are the proposed benefits? So many of these tablets and therapies seem to alter cycles which can be a bit annoying! How long is your cycle normally? Miscarriages can alter cycles. Mine went from 28 days to 30-35 days after the last MMC. I wouldn't delay the protocol, although I had the same thoughts and feelings as you and was reluctant, but by the time the months had rolled by I had gotten my head around it. And now that I know how well I am getting on on all the drugs, I know I needn't have fretted and agonised as much as I did. I was being a fanny! Dr S has found things that need to change for you so I would put your faith in that and follow it whole heartedly.

P.S. Re: the cysts, I also read they remedy themselves! xx

@Sunshineblonde1 I hear you babe, but ivf doesn't necessarily negate those problems, which is why I am just as nervous about the nuchal scans and blood tests. Natural conception is really the best way of weeding out the less capable sperm, plus you have been healthy, exercising, and you are young, I am positive that all's well on your end. Did you have your scan and intras today? I was there today! I wanted to write in advance but I was in a rush so I forgot to post here to ask you if there was any chance of spotting you! Wedding planning sounds like they are on schedule! And so does the house search situation.

My scan today went well I think and heard heard the hb first time. Had the intras after. Cyst is still quite big but going by what you guys have said and what Dr said, I am not as worried anymore. Sunshine are you doing the NIPT test around week 10?

@Chickjen If you are not thinking about Dr S now, I would still say keep the folic acid, healthy eating and exercise up! And if I were you, I'd invest in the OPK to track ovulation just to get an idea since you started new supplements. Also yes, what are N Acetyl?

Dr S did tell me off for listening to my ivf clinic with regards to my thyroid meds (yikes) so I think I am going to voluntarily graduate from my ivf clinic and stick to Dr S and my hospital to avoid confusion. But my pockets feels very light after paying the invoice today. This baby is rather expensive!

Hope everyone's well! @HappyApple05 How's it going??

Xxxx

@Sunshineblonde1 fingers crossed all is well at your scan today 🍀

N Acytyl Cysteine I believe is a type of protein you get from food. It is supposed to help with all sorts of things including liver health and fertility, especially PCOS. I did drink a lot in my 20's and because I had had cysts plus my cycle which used to be around 30/32 days suddenly dropped to 26, I thought I would give it a try. But like you say there are so many of these things it is impossible to know which one might help your specific circumstance.

Work don't know what's going on, I stopped telling them after the 3rd. I think they would be supportive if I asked but I find it so much easier to deal with with the less people who know. I also find it really doesn't help talking to people who have never experienced anything like this, and nobody at work has.
I'm sure once I commit to the protocol it will all fall into place, what I am struggling with at the moment is starting the humira. It costs around £900 and DrS does not stock it, he advised to shop around a few pharmacy's for the best price, and for the next few weeks I just don't see where I will find time, also nervous about injecting myself with such an expensive drug, what if I get it wrong! Has anyone else used humira? I think I need a few weeks to get the house a bit more 'normal' so I can put full attention into this. But in the meantime it did cross my mind, not to try, but not to try and prevent it either just in case a miracle happens stupid I know!

Hi @nixwix lovely to hear an update from you and so pleased that your scan went well, that’s so reassuring! Yah I’m here now, had the 8 week scan, we have arms and legs and a good strong heartbeat 💗 😍 amazing how much the bean has progressed in 11 days. Measuring 8w4d. Phew! Another milestone achieved. Yes I’ve booked the 10week harmony and Sex test and 12 week nuchal. Dr S said at 10 weeks the miscarriage risk goes to 2% so everything crossed for that milestone. We’ll stick to Dr S until 16 weeks I think.

I think I just had this preconception that IVF selects the best egg and sperm? I’m fairly young (?) I guess but my egg reserves are that of older 🤪

What did your IVF clinic say about thyroid meds?

I hear you Hunni, this baby is our holiday money this year 💸💸💸 but his tests, advice and equipment really are the Rolls Royce of treatment.

Hope all are well and looking forward to updates 😘 hope you are all enjoying the beautiful spring weather x

Hey @chickjen 🌞 that’s interesting about the N Acetyl. Where did you find out about it?

I think you’ve got the right idea, fertility and conception is all about balance. I believe it’s never just a silver bullet but a number of supportive things that helps us get the sticky one. Mental, physical and nutrition playing their roles too. I think our bodies have just been a bit out of whack in the past. Plus there’s a bit of ‘grace’ and a wing and a prayer too.

I’m sorry I don’t know anything about Humira, but will be interested to hear more about your journey, cheering you on! Can Dr S nurses give advise about how to inject? I’m sure if Dr S suggests it, you can be confident all would be ok? X

Great news @Nixwix and good advice thank you 😄 I am taking the supplements but at the moment I am living from the microwave, might be another good reason to wait a couple more weeks to start! 😀

@Sunshineblonde1 I think I actually read it on an old version of this thread I found before I found this live one.
I'm hoping for £900 it's been relatively idiot proofed and just a case of sticking it in but the unknown is the most worrying

@chickjen I know what you mean, fear of the unknown can be paralysing. From what I’ve learnt on this journey so far we have to just trust the experts and take that leap of faith, if I knew what I know now about taking the steroids I would never have faffed in the first place. So I think the same will apply to the humira. Good to do the research and reading first though to get the old pickle around it! Hope some ladies here can give some words of comfort and advice on Humira xx

Hi all, just checking in. Am on day 2 of the letrozole and have my follicle scan next Tues on CD9. This will be out first month of trying the SuperO and the first month of trying since our first loss on the programme at the beginning of Jan. Now on the complex plan with steroids, hydroxy and the rest. Will keep you posted!

@Chickjen okay, wow, that's interesting about N Acetyl. Thank you for enlightening us, so much out there and so little do I know. Also absolutely not stupid, you are going with your gut instinct and doing what's best for you. Also about the injection - would you be more comfortable if your partner did it for you? Is it sub cutaneously administered? If so, it's super easy, usually you won't even feel it.

Also I completely agree with you, I have recently realised that it really doesn't help talking to people who have not gone through similar issues, or with people who have little sense of empathy or knowledge in this regard. I did mention my miscarriage and ectopic to a few 'friends' and 'family' (naively in hindsight) and only felt more alienated because they don't get it. It's strangely still a taboo topic I feel. My closest of friends (coincidentally they are doctors), both our parents and my brother have given us the kind of support we needed. My husband's brother and wife have been rather insensitive. The ivf and pregnancy are all very hush hush because I realise the less people know, the better I can deal with everything.

@DaniMERL Good luck!! Let us know how you get on and if you need us, we're here!

@Sunshineblonde1 amazing news on bub's progress! Super pleased for you ❤️. At my 8 week scan, baby measured a day late. But Dr S wasn't too worried. The 3D/4D scan photo was so graphic! Haha. Yes I am doing the Harmony test too (without the sex) and then the nuchal at week 12. My hospital also offers the dating and nuchal scan so having it done there too. Do you think I should avoid the repetition as it can get confusing? I'm also sticking with Dr S till week 16. My ivf clinic basically routinely checks my Tsh as part of their protocol and amended the levothyroxine accordingly which Dr S didn't like. He said, all immune issues must go through him. So I have stopped consulting my ivf clinic as their job really is done now.

A bit long and late post, hope everyone's well! Sending positive vibes to all.

Thanks @nixwix 💗 we’ve got some big milestones coming up haven’t we with the Nuchal and Harmony. I personally would just have those tests done once as what difference would it really make doing it twice. They will be the same result. I’m just sticking with Dr S. He has been tracking my thyroid too. He does like to be in control of that stuff when you are under his care which I can understand. When’s your next scan/harmony?

Those 2D/3D scans are flipping incredible!! Gold plated haha! He’s got some pretty nifty tech hasn’t he. He was so excited by the scan he practically skipped back to his desk, with us skipping in tow lol! It was nice to see 😃

I agree, I felt quite lonely with what I was experiencing before I found this thread ! I have told two select best friends and family who have been supportive and my gym teacher who has to know and is so sweet as she pretends to the class she is making adjustments due to a ‘lower back pain’ issue rather than shouting out that I’m pregnant.

Xx

All the best @DaniMERL wow that time has whizzed by.

hoping for a new wave of spring BFP looking forward to hearing all updates 💛🌼🌞🌱 🤞🤞🤞

Hello, just thought I'd post a small update. I was briefly on the last thread (but forgot my password then lost the thread) so wasn't on it for very long.

I'm currently 19 weeks and all looking good so far. Fingers firmly crossed!

I have been on Mr S plan (steroids, progesterone, Fragmin, omega 3, vitamin D, vits and aspirin) for high killer cells and sticky blood following multiple times MCs..

I've finished steroids and progesterone and 1 week left of aspirin. 🤞🤞 20 week scan next week.. Just trying to dodge the chicken pox which seems to be spreading around our local area with a vengeance...!

I haven't read TFT yet, but will go back and do so... Congrats to all those with good news and many positive/sticky vibes to you all..

Hey @UnicornDust17 thanks for the update so pleased all is progressing so well 💓 that’s such inspiring news.

I have a question re:Fragmin, do you know if it’s ok to use Arnica cream on bruising? The nurses recommended it but when I bought some from H+B it says not to use when pregnant 🙄

Hi guys,

A very quick question. Does anyone know what happens if I forget my dose of Prednisolone for one day? I may have forgotten yesterday, I cannot seem to remember. And I took them late in the evening today. I am super scared that I have put my pregnancy at risk.

@nixwix I really wouldn’t worry as they stay in your system - don’t forget how long it takes to wean off them. I think the advice is to not take any extra to make up for it and to just carry on as normal. You could always check with the clinic though x

Thank you @DaniMERL for the reassurance!
Clinic said the same thing too. Hopefully everything is okay. 🤞

@DaniMERL Hope you are well and good luck this month🤞 I saw Mr S last week and he suggested natural stimulated cycle for me. I went for a scan yesterday with someone else as Mr S wasn’t available and they charged me another consultant fee and the cost of the scan. Did you have to pay for a scan as well as consultation when you went to see them on the 9th day of your cycle? Xx

@Megan234 I saw a lady and it cost £460 including the trigger shot. There were 2 follicles. I have to test on Tues 19th xx

@DaniMERL It’s so expensive. I didn’t take the tables because Mr S said that I don’t need them, I’m doing it naturally but with the injection. I had one follicle yesterday and I need to inject myself on Tuesday. Good luck lovely x