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Immune/NK cells - pred thread 29

1000 replies

StillTrying10000 · 19/02/2022 20:14

Starting a new thread as the last was full.

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6
MrsMargot · 20/03/2022 17:09

Hello everyone!
I hope you do not mind me joining.

This is the second time I am joining this group. First time was back in 2019. After 3 mc I went to see Dr S, he put me on the complex plan and thankfully I had a successful pregnancy. We have decided to try for a another baby and I went to see him again a week ago. I did another round of blood tests and I am reluctantly hopeful that things will work out.

I am looking forward to all of us having good news. And if it is any help at all, I am living proof that things can work out. I am trying to remind myself too because I have had severe anxiety attacks after my 1st mc ( that followed me during all my losses and my whole pregnancy). Prior to Dr S I have had TONS of tests done (private and NHS) and all were ‘normal’. Well they weren’t that normal 🙄. I am a science person and something was not adding up. I am glad I have had something to work with at least in my mind.

Sending love to everyone ❤️

Arwen7 · 20/03/2022 20:44

Hi @WillowTree0721 congratulations that is amazing. I am now nearing 5w so I totally get how you feel.
I am a midwife, all I can say it’s that what they have told you at the hospital is correct info. There are no ranges that apply to anyone only estimates and they probably don’t follow that because every pregnancy is different and can’t make a diagnosis with only one result. It is really early on, so it may have implanted very recently. As it is not an exact science, the first hcg number does not mean much at all, especially that early. I’ve seen lower numbers go on to have successful pregnancies and the other way round. What really matters is the progression and whether it doubles every 48-72h so I hope they can do another blood test soon and you may get more answers. I would not trust the urine sample either if it was diluted and you are only 4w as at the hospital we don’t use frer but the ones less sensitive so totally possible it would not pick up a 4w pregnancy.
Try to stay positive and relax as much as possible, crossing my fingers and toes for you!

Hi @MrsMargot thanks for sharing your story, you really give me hope and all the best ttc ❤️ Do you know the results from Dr S yet? Is he putting you back on the complex plan considering it worked last time?

MrsMargot · 20/03/2022 21:10

@Arwen7 thank you very much! And congratulations to you too! 5 weeks! That is wonderful news! What kept me going last time was to only look at one step at a time. I was counting to the next scan and it worked. I won’t lie, I did not know what was this thing women were saying by ‘enjoying their pregnancy’. I did enjoy my pregnancy the second baby was out and alive but everything went well and it CAN be done. I promise you! 💪

I will have my results the 28th that I am seeing him again. He did put me in the complex plan and he said that regardless of the results I am good to try from this month (which is very unlike him). He said that he is testing some things again to be sure the numbers are similar but he would not change the preconception plan. I suppose it is not that common to fall pregnant the first month anyway so I guess why not. The only thing I did differently last time and I am doing now too (with his agreement) is to take different progesterone to the one he recommends on the complex plan. I have also noticed that he has added CoQ10 to take preconception however I have been taking it for a long time now (i had a full vitamins plan from a nutritionist last time and I am following it now too). Other than that, everything else exactly the same.

Did you have your first intralipids?

WillowTree0721 · 20/03/2022 21:39

Thankyou so much for replying @Arwen7. Congratulations to you too. You are literally about a week ahead of me. My 6 week scan is booked for the 4th April. I don't have many symptoms either don't worry. I just constantly need a wee. I'm either 14 or 15 days past ovulation (not entirely sure which day it was that I ovulated) so you're right it is early as my period is technically due either today or tomorrow. Yes they've asked me to go in for another blood test to see if it doubles so I just have to wait and see I guess. It's just so hard dealing with the anxiety. I got my first positive pregnancy test on Tuesday so I don't think it's recently implanted as it's 5 days later now so I just hope the HCG level of 337 is good for my stage and it continues to rise. I'm glad you said that about the urine test they did on me!
I've got everything crossed for you too and I hope you can find some time to relax too - you must be so busy working as a midwife! Thankyou for replying and sending such a supportive message xx

Sezmarelda1 · 22/03/2022 13:39

I have everything crossed for you @WillowTree0721. Have you been back to the hospital to have the hCG blood test repeated yet?

How are you coping @Arwen7?

Welcome (back) @MrsMargot. I totally relate to the anxiety after the first MC. I had two MC's, then a live birth, then two more MC's. Even after I had my live birth the anxiety was still there in the following two pregnancies. It's really difficult. Do you think being a science person makes your anxiety worse in some ways? I work in medical research and find myself scouring the internet for information in my quest for answers. In some ways it helps us move forward, but I know for me it feeds my anxiety too.

I'm on my first AF post-miscarriage and it's been 11 days and still not showing any signs of the bleeding slowing :( I don't know if that means I'll ovulate late this month, or if this cycle will be a write off for TTC. I'm trying to relax and not get annoyed by it but it feels like potentially another cycle wasted. I'm off work today so I'm going to make the most of the nice weather and spend some time in the garden reading Alan Beer's book "Is your body baby friendly?".

I hope everyone is well x

MrsMargot · 22/03/2022 14:20

@Sezmarelda1I am so sorry for your losses 😔 … a day in the garden sounds very nice. By the way, I had quite a few days of bleeding after all my MCs. I can go back on my notes and see but the first one I had quite a bit of bleeding (pill at the beginning and ended up needing a D&C). Second one no D&C but I definitely bled for 10 days and third one a D&C one. I had also noticed that I ovulated as per normal after the second and the third (first time I was not charting as precisely). So

I really do not know if f my inquisitive nature made things better or worse but after having so many medical professionals saying nothing is wrong and that I am just ‘unlucky’ I was researching like a mad woman medical journals and I was comparing my blood panel to those in the studies. This is how I started thinking that potentially there is an issue with my NKCells. Not a doctor but by the time I went to Dr S I almost had a good understanding of what he was looking at.

If you do not mind me asking, were you on immunosuppressants this last time? I know that there is a combination of ladies from Dr S and other doctors that follow similar protocols.

Sezmarelda1 · 22/03/2022 15:44

Was that straight after your MCs @MrsMargot, or for your first AF following the MCs, if you see what I mean? I bled for about 3 weeks after my most recent MC, then it slowed to spotting for about a week, then 1 day of nothing and then AF started. It's AF that is continuing on for way longer than is usual for me, rather than the post-MC bleeding. This hasn't happened with my previous MCs. If it's not showing signs of slowing down by the end of the week I will contact my GP or the early pregnancy unit for advice.

I guess everyone here is in a similar boat in having scoured the internet searching for answers. I'm not a patient of Dr S but am currently under the care of Prof Quenby. With my last MC I was taking progesterone, folate and aspirin, but that was before I'd seen Prof Quenby. Next time she wants me to start prednisolone and progesterone from a positive pregnancy test, but delay aspirin until 10 weeks gestation. I'm also on long-term anti-tnf medication similar to Humira (called Infliximab) for an immune condition and have been throughout all 5 of my pregnancies. At this stage I'm not entirely sure if that drug has been a help or a hinderance but stopping it to find out isn't an easy thing to do without risking a big flare up which could put me in a worse position for TTC. I took it throughout my successful pregnancy too so I know it's possible either way! I do think there is probably an element of timing with my anti-tnf drug as it's given as one dose every 8 weeks so the level of immune suppression will go up initially and then down as the drug leaves the body. I'm hopeful adding prednisolone will help to flatten out those ups and downs somehow but that's just how I'm seeing it in my mind, not really based on anything particularly scientific!

VenusStarr · 22/03/2022 17:17

Hi everyone, sorry to not have kept up to date. Good to hear some positive news ❤️ @WillowTree0721 @Arwen7

I had my review with Dr S yesterday. It went OK but my head was spinning after. He was a bit unhappy that I'm taking the sitagliptin from Tommy's. He wants me to take gcsf injections and has put me on metformin (I don't have pcos or anything). He also suggested we get my dh to do sperm dna fragmentation and embryo bank.
It was a lot to take on but we have decided to continue with the sitagliptin, add metformin and then plan a transfer with our remaining embryo in May time. If it fails, we'll do what he suggested. He's said I can go back on hydroxychloroquine too but am going to see how I get on with metformin first as I've heard it's pretty horrible.

@myrainbowjourney how are you?

I'm sorry you're still bleeding @Sezmarelda1 it could mean your next cycle is delayed. I hope you're not in too much discomfort ❤️

Hi @MrsMargot I'm under Dr Shehata. I've had 2 losses on his plan (ivf pregnancies), 6 in total but they weren't on treatment and were natural. I'm on the full complex plan with hydroxychloroquine, prednisolone, intralipids and aspirin. I was also on clexane and lubion in my recent pregnancy but it ended in a missed miscarriage of a healthy baby. So he wants to add in more meds now.

myrainbowjourney · 22/03/2022 19:20

@VenusStarr lovely to hear from you. I've been a bit rubbish on here for a few days.

Sorry to have not checked in about the appointment. Do you feel better now you have got your head round it all? What did he say about why he thought you had lost a healthy one? Are you going to go for the fragmentation tests or will that be after your next transfer too?

I'm fine thanks, feeling a bit low again on this rollercoaster cycle of emotions. I have my follicle tracking on Friday so let's see. Trying to manage my expectations.

@WillowTree0721 lovely to read your update. I agree that I was always told it's not about the number but the increase %. Have you had the bloods done again?

@MrsMargot it's great to hear a success story from the plans. It's also really good you can try before your results. Did he have to do the full set of tests again?

@Sezmarelda1 not sure what to suggest about the bleeding. Definitely get in touch with EPU or your GP. Let us know how you get on.

@Arwen7 how are you getting on?

@89Hope what happened with your cycle in the end? Did you get any answers from the clinic?

Sending love to all xxx

Arwen7 · 22/03/2022 20:28

Hi everyone sorry been quiet, just working lots

@MrsMargot that’s exciting then, best of luck and keep us updated. I did have the first intralipids on the 11, day after the bfp.

@WillowTree0721 you are very welcome. How are you doing? Did you get the second hcg done yet?

@Sezmarelda1 sorry to hear about your miscarriages. I had heavy periods every time after miscarriage (I mean next AF). I am assuming you will just ovulate later but hopefully your body is just doing what it needs to do. Hope you enjoyed the lovely sunshine today!

@VenusStarr what a rollercoaster but makes sense to continue with what you are doing, at least you would have given it a try before trying something else. I know some people cannot tolerate Metformin at all whereas other won’t have any side effects so I hope you won’t feel it much.

@myrainbowjourney hope your appointment on Friday goes well. This journey is all about managing emotions and expectations isn’t it? Can be too hopeful but can’t be too negative either. I hope it is gonna come useful in life later on!
I am fine thank you. I have been feeling tired. My only issue is that I am working quite a lot and the days are long and crazy busy. So several times during a shift I will be cramping and I feel like I should probably take it easy and rest but I don’t even have the time to drink or pee let alone stop! It is what it is and at the end of the day I don’t think it would make much of a difference anyway. But happy the days are ticking by and still no bleeding so let’s see, staying positive and taking one day at a time.

myrainbowjourney · 22/03/2022 20:34

@Arwen7 you're absolutely spot on. I battle with being too positive and then crashing down to earth if it's not a good appointment, and then being too negative and not hopeful enough, and what if that makes me have a bad appointment. It's so difficult to get the balance.

I know it's easier said than done, but is there any way you can take it a little easier at work? Not because it's any risk, but more so you aren't exhausting yourself. Try and make sure you get some downtime to look after yourself xxx

MrsMargot · 22/03/2022 20:50

@Sezmarelda1 I had a look at my notes. First mc was the most traumatic I guess. I bled for around a week normally then spotting for another week. I had some leftover bits so I ended up having a D&C. Bled for 7 days and I ovulated 17 days after the D&C. Second time i was earlier (6 weeks). I bled for 9 days (I am noting 6 normal flow and 3 days spotting) and I ovulated 17-18 days after the beginning of the mc. Third time, I had a D&C immediately (missed mc at 8 weeks). Bled for 10 days (I am noting 4 days normal flow, 6 days spotting) and I ovulated 20 days after the D&C.

From what I found out, I was semi textbook. It is quite normal to bleed for a couple of weeks but definitely check with your doctor. Apart from the physical aspect it is the psychological part that you do not want to delay.

I have heard of your doctor! She has stellar reviews so in good hands! That is a very good base. It does suck to have to deal with additional complications when it comes to medication. Sometimes I feel like it is as much of a guessing game for all of us including our doctors 😔. I am sending you a big hug ❤️

@VenusStarr I am so sorry for your loss… that sucks… my third missed mc was a healthy baby and it was a sock.. at the time I was on prednisone (but REALLY low dose comparing to what I was in my live birth) aspirin and progesterone. It turned out that I needed much higher dose and from ovulation to make it through. As I said above, it does feel like a guessing game… 😔 I am hopeful that with adjusted medication things will be alright.

@myrainbowjourney he ordered a full blood count, vitamins, blood clotting (I had one borderline positive and one borderline negative so he wanted to make sure I am still ok), one of the NKCells, hormones and I think that is it. 15 vials of blood 💸💸. I will see on Monday what they show. He said I was ok to try but I bet it was before my case was semi straight forward, fairly recent and he does know that the chances of falling pregnant on the first month of trying are fairly slim 🤓. I do not think my case is any special!

Arwen7 · 23/03/2022 09:01

Hi ladies,

Unfortunately last night I had brown discharge on wiping and more this morning. The mild cramping is there but has been there since I got the bfp. Last three mc for me started with brown spotting so feeling really deflated and hopeless. I’m only 5+2 today and this is the first time pregnant under Dr S complex plan. Has anyone been in a similar situation before and is it worth calling the clinic? I have a 6w scan booked for the 1st and I know there is no point really in going any earlier.

myrainbowjourney · 23/03/2022 09:30

@Arwen7 oh I'm so sorry you're having to go through this worry.
I would probably call the clinic and just let them know, see if they have any advice.

Sorry I don't have any better words, or advice. Sending you love and positive thoughts and wishes. Hopefully just early pregnancy spotting and all will be well ❤️
Keep us updated xxx

MrsMargot · 23/03/2022 12:57

@Arwen7 I would definitely call the clinic. I have heard of spotting at the beginning of the pregnancy before (one case was an old clot dripping through little by little) that ended up being nothing. However I totally get the feeling and I am very sorry you have to go through this worry…. I hope it is absolutely nothing to worry about.

Arwen7 · 23/03/2022 14:18

Thank you so much @MrsMargot @myrainbowjourney
I did call the clinic and they said to monitor and stop the aspirin. I do hope it is that one time this is some ‘normal’ early pregnancy spotting and not the start of mc like the other times. I will keep you updated if anything changes. At least the weather is gorgeous, hope everyone can find some time these days to enjoy the sunshine xx

Sezmarelda1 · 23/03/2022 15:01

@Arwen7 you must be so worried. If I can offer one positive personal experience it's that I had brown spotting early on even in my successful pregnancy, so please don't lose hope at this stage. Sending a big hug x

WillowTree0721 · 23/03/2022 21:40

Hi @Arwen7 I really hope you are ok. I'm glad you called the clinic and they've advised you. Hopefully it'll settle down. With my little boy I also had lots of spotting and bleeding early on in the pregnancy but it was fine in the end. Make sure you rest up and don't do too much. Take time off work if you need to xx

WillowTree0721 · 23/03/2022 21:46

@VenusStarr Dr Shehata diagnosed me with PCOS (I had absolutely no idea I had it a - it's been missed my whole life) and he put me on metformin and inofolic alpha. I really struggled to tolerate the metformin 3 times a day but he has dropped me to twice daily and I'm absolutely fine on it. No side effects now at all and it's made such a difference to my cycle, ovulation day, luteal phase length. I literally couldn't get over the positive changes it made for me xx

WillowTree0721 · 23/03/2022 21:49

Thankyou for all asking how I got on too. I had my bloods done on Tuesday and they were ok. They've asked me to go back tomorrow for another one 🤞🏻 xx

Arwen7 · 24/03/2022 10:01

@Sezmarelda1 @WillowTree0721
Thanks so much, that is reassuring. I am feeling a bit better as it has not gone worse if anything today is just a small amount of brown so hopefully it is settling 😥. I did call work and told them, they were very understanding and I got a few days off which really helps.

That is fantastic news re your bloods! ❤️

VenusStarr · 24/03/2022 18:47

@myrainbowjourney I am up and down with it all. It feels like time has sped up too and we'll be doing another ivf round very soon and I'm not sure I'm ready 😕 I'm speaking to our ivf doctor next week.
I think we'll wait to do the dna fragmentation test, dh keeps saying that Dr S said he didn't need to do it (which is true). We just felt as we've already got an embryo we will just go for that one but if we need to do more ivf, it makes sense to do the test.

Started the metformin and think it's already affecting my stomach, I need to look at low carb I think. I've also started spotting today, so af will be here tomorrow, first af on sitagliptin.
I hope all goes well at your follicle scan tomorrow, let us know how it goes ❤️

@Arwen7 I hope the spotting has eased today, I'm glad you've got some time off and can rest.

Glad all was OK with your bloods @WillowTree0721 🤞 for next week.

@89Hope thinking of you xx

Sezmarelda1 · 25/03/2022 14:35

How are things going with the pregnancies @WillowTree0721 and @Arwen7?

I hope your appointment today goes/went well @myrainbowjourney.

My bleeding has started to settle thank goodness, it hasn't stopped completely but it's a lot lighter than it was 2-3 days ago, so hopefully that's sorting itself out. I got some test results back yesterday from the placental testing from my last MC. From what I can tell they didn't find anything out of the ordinary with the placenta. I've got a post-natal follow-up booked to go through the results with an obstetrician at my local hospital but that's not till mid-May (don't get me started on the waiting time!!) so I'm on my own in terms of trying to make sense of the results for now, but realistically it doesn't look like I'm going to be any closer to finding answers from the placental testing.

I hope everyone is doing as well as can be and making the most of the sunshine whilst it last x

myrainbowjourney · 25/03/2022 15:18

@Arwen7 I'm glad the spotting slowed down. How are you now?

@VenusStarr how are you feeling today. Totally know how you feel with the up and down. I went into my appointment today all cheerful, she must have thought I was a different person. But that's what this journey does to you. How are you on the metformin now?

@VenusStarr @Sezmarelda1 appointment was actually ok thank you. One on my right and finally - 2 on my left! One is small and one ready to go. Not too small but we are betting on the bigger one. I know there's absolutely no guarantee but I feel better that there's more chance.
She asked for OH to have the DNA frag and also just a sperm analysis. I think in our break month he will have to just bite the bullet and get them done. Just seems more and more money though. But I also think it's worth ticking the box. She said I'm having all the drugs and scans etc and if it's him we are missing a trick. Just seems odd we used to at least get pregnant. Now we aren't even getting that far. I have tried to get him to make better choices, mainly caffeine related. He doesn't have an unhealthy lifestyle, but he resists much change. I think the benefit would be that if someone medical told him to, he would. I'll be crushed though if we have done all these cycles and it comes back there's an issue there.

Don't rush into another round if you aren't ready. Is there any time restraints on it?

@Sezmarelda1 I always think that if there's anything significant, they would see you sooner. May seems a long way off but it'll come round quickly.

Definitely enjoying this amazing weather. Makes my mood much better xxx

FullMoon2015 · 25/03/2022 20:03

Hi everyone!

After months of lurking on these pred threads I've finally bitten the bullet and booked myself in to see Dr Shehata and would love to join this group for support.

A little bit about me - Im 31 and conceived a son on my 1st IVF attempt four years ago. Since then I've had 2 chemicals and 2 failed ivf transfers. Im going for my final IVF attempt in a few months time and want to throw everything at it.

Im anticipating there will be lots of immune blood tests after my initial consultation but im trying to work out what happens after the results come back in. Does everyone come back with high NKs but at varying levels? Has anyone ever come back with normal Nks and therefore was told they didn't need treatment? I couldn't find anyone who didn't have high Nks at the CRP clinic so am I right to think I will definitely need to take steroids and intralipids at the very least? Xxx

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