Immune/NK cells pred thread #34

Hey everyone! I've just been given my treatment plan with Dr S and I must say I'm very overwhelmed. Firstly I need to start by saying I suffer with huge health anxiety so I also really worry about what I'm putting in my body. He wants me on hydroxychloroquine immediately and if I'm to fall pregnant, for the whole pregnancy. I really don't want to take this. I've looked at the side effects, it's just something I'm not happy with taking for such a long time. Do you think he will allow me to do the plan without it? He's also said I can go ahead with superovulation. I just feel so so overwhelmed and anxious. I want to feel excited to try something to help us but I just feel scared. X

@Hopeandfaith1990 i am sooo happy to hear about your first heartbeat, what a moment that must have been. I have tried to write this message over the weekend but it kept deleting. Keep doing what your doing and not long now till your next scan. Are you have NHS scans with DR S?

@Gems2811 i have had cytogentic testing for three of my miscarriages out of 7 and all took 6-8 weeks to come back. hoping you hear soon? are you waiting to try again before knowing the results? Its strange how it takes so long, when NIPT results from a blood sample takes 2-3 days.

Trying to catch up with all the new messages. @pagey23 just rememeber it does only take one time. so don't lose hope just yet. I am so sorry about the stress with work. Definitely get signed off for longer.

I had my Nuchal scan with the NHS on Friday and it was over an hour long, baby boy moving around loads which was nice to see. My Preclampsyia risk with NHS is 1 in 137 - so much lower, maybe the upped aspirin is already helping. The Scans still don't get easier and going back to the same place we lost our first baby 4 years was so triggering. I can't believe with the NS - i now would normally have to wait to 21 weeks to be seen again. So my next NHS appointment is end of Jan. Just feels like ages away, even waiting three weeks to see DR Edge again feels like a lifetime away, but maybe i just need to try and relax and enjoy xmas without the stress of a scan.

sending love to everyone. x

@ChaE05 Could be! I used to ovulate Day 18 ish, the letrozole has shortened my cycles and I usually trigger around Day 12 now. Let us know how Tuesday goes. I'm actually going Tuesday afternoon!

@Deerdancer34no PCOS symptoms and I've had multiple scans. However I do ovulate late. Always have about CD18-20. So I do wonder if eggs are a bit over ripe by that point x

Dr Edge is just lovely! And yes Greece gives us more options than we had in the UK price wise, and the Dr I’m seeing did 15 years practice in the UK and so it feels like home from home

Can I ask for any of you beautiful ladies who had had cytogenetic testing of your losses with the NHS, how long did your test results take to come through? They said 5 weeks to me but it’s been 5 weeks now and I don’t even really know who to follow up with? My procedure was in Guildford but I don’t know if it varies trust to trust or if it’s all centralised?

Sending love to everybody, it gives me so much hope reading about everybodies pregnancies 🥰

@pagey23 I really feel you. I did my counselling with a charity specific to Baby loss. Do let me know if you want me to find the details. It was a programme of 10 weeks and really helped me off load, I could say anything and things I couldn't even say to my husband, my mum about guilt etc and it helped so so much. She likened it to Pandora's box where there were all these thoughts and feelings overflowing out of the box. By the end, she said you'll be able to take that box down and look into it, it will always be a part of you but now you can close it & put it away back on the shelf. Really resonated with me. Superovulation is marvellous I think, takes so much pressure off, you are told when to dtd and when to trigger. Very romantic 😅

@ChaE05 It helps enormously when your partner is positive and optimistic, my husband was the same, he kept saying it will happen. Hope is the only thing that kept me going tbh, it's so important! I personally think Superovulation is a good stepping stone to IVF (obviously depends on everyone's personal situations) as its not as invasive and hopefully you just need a little boost but do see what Dr S says as I am no expert & don't know enough about IVF as I haven't been down that route yet! Do you have any PCOS symptoms, NHS missed that and Dr Edge said that's probably why it took me longer to get pregnant which makes sense as egg quality not so good (that's why I take inofolic too). I also feel looking back I ovulated too late, so egg quality had deteriorated, whereas with Superovulation they can control when to trigger. Obviously everything has to align still and that's why it can still take time!

Thanks both. @ChaE05yes I have high NK but can’t remember how high - it’s been a year since I first got my bloods done! let me know if you start super ovulation soon and we can go through the joy of it together 😂😂 have a lovely restful weekend everyone xxxx

@pagey23so sorry your boss isn't being more supportive! People just have no idea the heartache and stress it can cause. It's a really tough journey to be on. 💔 if you need that time off then you have to take it for sure. Are your NK cells very high? I really hope that superovulation will be the thing that works! I have everything crossed for you xx

@Deerdancer34honestly everything you have written there I can relate to so so much!
I feel SO incredibly blessed to have my Son. I fell pregnant first time- never in my wildest dreams did I think that would happen! But also I didn't think I would be here over a year later still trying for my second. I had a conversation with my partner lastnight as I was having a couple of low days. I said I just have this constant sadness. He said to me he absolutely loves his life. He loves everything he has and feels so blessed. He told me that this is just a challenge for us and it will happen. He's very hopeful and positive- which is what I need.
I just keep questioning if this is the path we are supposed to go down, but we really need to try something at this point. Same as you said, NHS have told us they have done everything they can. So we either keep trying alone...or we try and get some help. I don't like the idea of jumping straight into IVF. I think I just need to take a leap of faith xx

@Deerdancer34thank you that’s so kind of you. I’m definately at self combust stage 😂. Will be taking up the counselling when I’m back and think it will help a lot to get things off my chest. My mind set is so bad - even though we DTD one day before ovulation I literally spent the last few days thinking I wish we did it then and then. Super ovulation hopefully will be a bit better for me mentally!! This is all so tough I hate it!

@pagey23 I hope you had a lovely time in Thailand & enjoyed it! Please don't beat yourself up but I get it, that feeling of 'wasting' a cycle but you never know, it only take one! That's really hard your boss is so unsupportive. I hope you get more time off, you need to do what you need to do to protect yourself and stress does definitely impact. I actually conceived after I finished my counselling and I was in a much better space mentally, so I wonder if that helped me. Just something to consider if you feel in a very dark place. Sending you lots of love, we're all here to help in any way we can. I think I would have self combusted without this group!

@ChaE05 Well mentally so much better because I look at my daughter and just thank my lucky stars, all I have ever wanted since being a little girl is to be a mummy and I would have loved a big family - acceptance about everything I went through was a huge hurdle for me. I still get times of this is so unfair, why me, why can't I just do it like a 'normal' person, why do I have to go through the financial implications, stresses, disappointments when for so many people its such a lovely positive experience from start to finish... but my counselling definitely helped me manage my mind better and I think appreciate my daughter 1000% more than so many people who constantly complain about their children - I want to scream at them 'it's a choice' and 'you are so blooming lucky!' Anyway that's my rant! I'm just hoping Superovulation works before the 6th cycle and there's no more losses (especially ectopic!).
I would just be upfront and ask Dr S, I went in straight with Superovulation this time and they were fine with that. He is actually fine, I think I was in a very very dark place when I first met him, I didn't have a clue what he was saying and I was very resentful and felt worried about spending this money when it might not work...but then I had no other option as NHS didn't want to know and it's the only thing I've ever wanted in life, so we went with it. For me it was nice having a plan tbh because I felt very cast adrift and uncared for at the time. See what he suggests. He does honestly care and although everything is a LOT of money, I genuinely think he does try his best for us. It's hard because no matter what happens, it is still all a bit trial and error but at least there are some options now.

I’m on my ninth cycle trying naturally and if this fails I’ll be moving to superovulation… I haven’t been able to do superovulation until now due to travelling lots with work and the timings not being right. So if this cycle fails I’ll start in December cycle. So we might be doing it at the same time @ChaE05if you can start that right away :)

I think my main issue is stress too. I got signed off work at the start of November - spent two weeks at home and then two weeks on honeymoon in Thailand where I’ve felt more relaxed. Bit gutted as it looks like I ovulated super early this cycle (day 11) so only got one try in on day 10 this cycle that I’m pinning my hopes to. I’m worried we didn’t give it a good enough go but I wasn’t to know that I would ovulate a week earlier than normal - I need to stop being so hard on myself…

have a call with GP on Monday about going back to work. My boss is already messaging me asking if I’m coming back on Monday - I’ve explained I’m burnout and going through this treatment but not once has she said I’m sorry for what you are going through etc. probably just wants me back working… HR are much more supportive though. Part of me feels like I need to go back as I have so much to do but being signed off for another few weeks will do me the world of good. Maybe it’s something you want to explore if you think it’s hampering your chance of conceiving. The only two times I got pregnant in the past was on holiday - both ended in miscarriage. Only had two pregnancies in 3 years….

@Deerdancer34oh my goodness WHAT a journey you have had. How are you feeling going into it this time?
I'm worried Dr S won't allow me to do super ovulation right away. I don't have the time (closer to 39) or the finances to try naturally a few months and then to potential try superovulation for 4-6 cycles. Because I'd be looking at nearly another year and we would probably be exploring IVF. I'll see what he says at the appointment Tues. I've heard wonderful things about Dr Edge. Should probably have booked in with her! X

@ChaE05 Thank you!
I had 3 miscarriages 2020, 2x 2022, struggled to get pregnant inbetween (probably partly work stress due to covid time) - all lost at 5.5weeks. Went to Dr S Nov 2022. I wasn't allowed to get pregnant for a month or two because he likes to prepare your body and I had to have 2 humira injections the first time. I was then left TTC for 3 months with just the medications, I was so hopeful but it didn't work and I felt complete & utter despair (it wasn't a magic solution and you have to be aware of that, it unfortunately can still take time). That's when I met Dr Edge (who is wonderful) and she suggested Superovulation & the first person who gave me hope that a baby was possible! I conceived on 3rd cycle, unfortunately that ended in ectopic, which was dreadful (just bad luck!) & I had to have an enforced 3 month break because of Methotrexate (it was actually probably a good thing having the break as it was the first time in 3yrs not thinking about TTC & weirdly after all the trauma I started to feel better but I had started counselling). Started Superovulation again Oct 2023. Conceived my daughter on 4th Cycle. Apparently Cycles 4-6 are generally more successful. Do ask if any other questions!

@Deerdancer34amazing ! I am so glad you concieved your daughter through the plan and sending you lots of good wishes for number 2 🙏 thank you so much for all the info, very informative.
Can I ask what your ttc history was before your daughter? X

@ChaE05 Do ask if any questions about Superovulation, I did it the first time and managed to conceive my daughter and now doing it again, in hope of No2. You take letrozole Day 2-6 (no side effects), you then have a scan to see how many follicles and when to trigger ovulation (the aim is to produce 2-3 follicles rather than 1, thus boosting your chances of conception). You then take the meds for only 10days, unless you are pregnant and then you continue. The only meds that many find hard work are the steroids but its only for a short time if negative and if you are pregnant, you just deal with it and you don't really care because you're pregnant 😅 I'm on 300mg of Hydroxy, inofolic x2, vitamin D, COQ10 200mg x3, pregnacare max & aspirin all the time and then for 10 days 25mg Prednisolone & 400mg Utrogestan and intralipid infusion. Your medication dosage might not be so high as you have lower NK than me!
It's a lot of info and very overwhelming, tbh I had no idea what Dr S was going on about & I still don't know if I really understand it all...I was so desperate and just pleased to have a plan after the NHS reply of just 'keep trying'. Do ask, there's so much to take in!

@Gems2811did you do 6 months of superovulation? Did all these meds given you any horrible side effects?

Im not suprised you have gone abroad for it, it must be significantly cheaper? It makes me made how much these clinics charge... they just play on the desperation we have for wanting a baby.

My partners morphology dropped from 4% to 2% in the last 4 months but his sperm count was really high and motility excellent so Dr S wasn't concerned about it. However we are just waiting on the results of the DNA frag.
Have got follow up appointment this Tuesday and I will be day 3 of my cycle then. I also don't think the DNA frag results will be back then. So I'm assuming anything we will start will be the following cycle. Feel very apprehensive for my appointment as I feel quite overwhelmed with it all and worried about taking all this medication x

Mine is 25mg Pred, 200mg hydro, 400mg progesterone, 75mg aspirin (I think that’s right..) I did Superovulation, I just moved to IVF because we’d set the target of 6 months of trying that with Dr S and then they linked me up with Dr Jain who has a satellite clinic with them. My IVF is actually now in Greece because I couldn’t afford to do PGTA in the UK after all of this testing and treatment lol. I realised I had endo because I was just about to order my IVF meds with Dr Jain and I ended up in A&E with what I thought was an ectopic or something. A test called Endosure gave me a high probability of having it and then I went to see a specialist who confirmed and operated. Sorry that is a long and boring story! I’m still doing the whole immune protocol for my NK cells alongside the IVF plus a blood thinning injection

I’m going to add back in intralipids for my FET because that’s the only thing I dropped from the DR S protocol and it plays on my mind that that might have made a difference to my loss

Do you know if you have male factor? The Superovulation is pretty cool cos you’re producing more eggs each round x

@Hopeandfaith1990right I see. Woahhh so many different medications, but all worth it now you are pregnant. I had my AMH tested about 5 months ago and it was 9.7 xx

@Jecca88 Really hoping today is a lovely scan for you 🙏 I personally loved it when I could feel the baby move because that to me meant she was ok because I didn't have the scans to check up anymore but everyone is different! I think they let you do 6 rounds of Superovulation so I've heard, so I will probably do that but I'm not really thinking about it because I'm hoping I won't have to come to that decision! Bury my head in the sand 😅 Ah and thank you to you and @Hopeandfaith1990 because I sometimes feel guilty already having a daughter but as you said @Hopeandfaith1990 it is a rubbish method of conception 😅 Drugs, anxiety and uncertainty....a lovely cocktail! 🤣

@Hopeandfaith1990 Many many congratulations!!! There is just nothing like seeing that heartbeat, I am so utterly delighted for you! I know it's still very early but you reached a new milestone and that feels good. Bring up that feeling every time you feel worried 💖

@ChaE05 Welcome, so sorry you are here but its amazingly supportive and was the only thing that helped me through after my losses. I think you may not need as many meds and I would also suggest trying Superovulation before IVF - that boosts your chances of conception but see what Dr S says?

Much love all 💖

@Hopeandfaith1990a huge congratulations to you! You must be over the moon. Will keep everything crossed for you. I see your scan was a very positive one 🥰
Thank you for replying... it's all such a long to take on. I am wondering if he would suggest superovulation. I hope so as I think I need a boost at trying to fall pregnant. Sorry, did you just go straight to IVF or have you had treatment for NK cells?
I don't want to try too many cycles with Dr S before I consider IVF as I will be 39 in May so i don't really have the time to wait xx

@Gems2811i am so sorry for your struggles and your loss 🤍 it's such a heartbreaking journey. It's so difficult just to find out the answers as to why!
I think this is my concern right now... I'm wondering if the NK cells are the real issue, but this is the path we have chosen. I also think I'm going to get my microbiome tested.
Did Dr S suggestion the super ovulation? And what were you exactly put on by him. I'm unsure how many cycles we would give ourselves before looking into IVF. We obviously need to be mindful of finances as none of this is cheap hey.

How did you find out about the endo? That's also in the back of my mind... I don't have any symptoms other than infertility! But also know it's very common to not have any symptoms and have it! Wishing you all the best for your upcoming FET xx

This is brilliant @Hopeandfaith1990 congratulations on hearing the heartbeat, a special day indeed 🩷

@Jecca88 hope your scan went well, I think of you all with your scans even if I’m not on here much

@ChaE05 sorry you’re in this spot too. I am/was in a similar situation to you although my total count was a bit higher, 238 I think it is but I had three early losses and then had my daughter with no immune protocol, I was being seen by Dr Gavin Sacks in Sydney (I lived there then) who specialises in the the Bondi protocol which is essentially for NK cells about those losses, and he didn’t think my levels were high enough to treat with anything other than progesterone and aspirin. Fast forward to this time last year and Dr S felt my losses were due to my NK cells and I did Superovulation and the full immune protocol for 6 months and never got a positive test. I found out on month 6 that I have severe endometriosis and after having that operated on, I fell pregnant on the following cycle. I did lose that baby and I’m waiting on test results but I was Dr S protocol, just no intralipids. So now I don’t know whether my NK cells were to blame or not, I’ll still continue with Dr S meds for my upcoming FET because I probably have a few things going on but I think what I’m saying is that personally I wish I had continued to consider that other things were at play when my levels are lowish even if I did it all again. Like microbiome for example. I was totally blinkered to it just being my NK cells and wish I’d done all my treatment with Dr S after the op when I was a year younger x