Immune/NK cells pred thread #34

ladies who aren’t pregnant yet and mentally struggling, have a watch of this - it may help. I’ve been following this woman for a few months now and I find her videos quite insightful but also mindset videos like this really help me. I’m sharing in case it may help you too. I’m actually thinking of signing up to her fertility circle
https://www.instagram.com/reel/DSDfkHIAcH2/?utmsource=igwebcopylink

ahhh sounds awful @ChaE05 - i think its worth talking to the GP to see if you can get some CBT for the health anxiety - it really helped me. I remember after my first loss - it took me about 9 months to concieve again, but then on average its about 2-3 months for each pregnancy after.

ahh @Gems2811 its defo worth calling up and seeing if they have the results back and to call as soon as they have them. Are you hoping they find nothing on the cytogenetics and you can just move on with a FET?

@Deerdancer34 sounds like a much needed break. Nightmare about the xmas eve pregnancy test - fingers crossed for you. I know that CRP want to try and get the intralipids as close to 4 weeks apart but a few days here or there is not major. It really depends when you have the pre-ovulation one.

I am sorry @TammyinCork - so shit but i know that months can change so much with scans and follicles and until stimulation you won't know. I was told i would be lucky if i got 4 eggs and i got 23.

@Hopeandfaith1990 will be thinking of you on Friday. Is the Scan in the morning?Glad you told HR, but you're right its so hard to get it unless you have been through it. Its totally all consuming. I have been there and feeling like I just could not get through it, but somehow each week i have and you will be surprised at your resilience of just putting one foot in front of the other. Its not enjoyable but please be kind to yourself.

Incidentally, Microgynon is not a licensed medication here in Ireland - I only got it due to sheer luck. Which is strange, as I was on it in the UK back in 2012, when I was in a different relationship, with no problems!

Hello all, just to say that the aloe vera juice was recommended to me on a Facebook forum, UK Reproductive Immunology Support, and I take a small capful of the stuff (from Holland and Barrett) every day.

In other news, I've been caught up with trying to organise the IVF in Spain, and got some shitty news today. Apparently my basal ultrasound scan showed a lining of 10mm and a 17 mm dominant follicle, which means that the doctor doesn't think we should start treatment just yet. I am beyond disappointed... I will get a follow-up call from the doctor tomorrow morning, but just wondered if anyone knows what this means?

I also had considerably fewer follicles than the scan in October (which had showed 15), and wondered if this is due to taking Microgynon for the last 2-3 weeks, as the IVF doctor recommended?

Hope everyone is doing really well...

@Jecca88 I'm just going to Wales but my 3 brothers and all their kids are coming, so want to see them. I'm to do Pregnancy test Christmas Eve (😅🎄Happy Christmas 😅) I wasn't going to come back until 2nd Jan. I could maybe do 30th or 31st but that would be 6/7days after 🤔 I've always wondered about intralipids but then you feel if you don't do them then you'll be jinxed or something 😅

It’s so overwhelming @ChaE05 , I felt like this too. I find Prednisolone really taxing but the hydroxy actually I don’t notice at all and give been on those solidly now for almost a year. I had a lot of anxiety about the intralipids but the cost is the worst thing about them haha

@Jecca88 yes my Dr wants to know the results from my cytogenetic testing before my FET because if it wasn’t chromosomal I think he might want to investigate further. I had to cancel my appt on Monday because they haven’t arrived yet and I’m just in a panic with their Christmas closure. I remember being in floods of tears because it was like this with CRP last year. My cycle was late and I needed a follicle tracking scan the day before New Years Eve. So happy for you that you’re heading into the festive season with good news xxx

@Deerdancer34great to know you didn't suffer any side effects. I need to fully process it all and have a talk with my partner about it all x

@Jecca88oh I didn't know you were pregnant. Amazing 🥰 so happy for you. How far gone are you? After 7 mc 🥺 did it take you long on his plan?
I just worry for me, although I have had 2 early losses its actually getting pregnant that seems to be a big problem now. I fell first time with my son. He's just 2. Then fell 3rd cycle trying for this one which obviously resulted in a loss, fell immediately again, chemical. Now 9 cycles of nothing. We are also waiting for partners DNA fragmentation results to come back.
How do I manage my health anxiety? I don't 😅I just make myself and everyone around me suffer. Side effects - dry eyes = I'm going blind.
Tinnitus- I'm doing deaf. Losing hair= I will go bald. But it will play on my mind so much. I don't know if I can put myself through it , but obviously so desperately want a baby x

I think it can be overwhelming reading all the side effects from drugs @ChaE05 - try if possible to stay away from it - as hard as that is. It can take a while to digest the results so be kind to yourself and really digest it this week, mull it over with your partner. Maybe give yourself a specific time frame to start? how do you manage you health anxiety? have you got any therapy for it? I think even a slightly raised NK cells can cause early losses, and CRP have a 80% success rate. I am willing to take anything if it helps and who ever knows if this will works and if its down to the CRP, but its the furthest we have got and I have had 7 miscarriages before this - only 1 of them was a genetic issue.

Thanks my love @Deerdancer34 - so i tested positive on a sunday - which i think i would have been about 4 weeks and had my intralipids on the Tuesday, but bear in mind i didn't have any pre-ovulation intralipids and was only on the Hydroxy at the time so had to start the pred and progesterone at 4 weeks, i am guessing 14 DPO. Where are you going for Xmas? when is your ovualation day predicted?

@Jecca88 I'm so pleased your scan went well! Enjoy Christmas, you deserve to! Can I ask how long after your positive did you have intralipids? They said to me today 2-5 days but I'm going to be away over Christmas...

@ChaE05 Its very overwhelming. If it helps I've had no side effects from Hydroxy and then intralipids and progesterone no side effects. Pred can make you feel jittery and sleep can suffer but I kind of got used to it. It's hard because nothing is certain and you don't know but for us personally we felt we had no other options, so gave it a go. The meds are to help sustain a pregnancy, Superovulation boosts your chances of conception.

@Hopeandfaith1990 Good luck for Thursday 💖

@Jecca88thanks for your reply and so sorry you suffer too. Debilitating isn't it? I just know how my brain will work taking all these meds. The anxiety will be too much. I just keep reading people saying they have had hair loss, tinnitus, sickness, eye problems. Just scares me! Yes also wants me on pred until 16 weeks. Along with progesterone and the intralipids. My Nk cells were only slightly elevated and the activation borderline? He said the ones tested for implantation and miscarriage were normal. We have been unsuccessful in falling pregnant for 9 months now since our last 2 early losses. I really want to believe this is the answer but I just feel unsure this is the reason why. I don't feel certain this is going to get us pregnant. But again, I feel like that might be my anxiety making me feel that way.

Hey @ChaE05 I too have health anxiety, but have managed it with meds (ironically) and therapy. But i have been put on Hydroxy for the past two years, luckily i have not had any side effects and actually barely notice a difference. How do you feel about trying it for a couple of weeks and see how you get on? I think you could prob try without it, but he seems to think this has a real good impact on pregnancy outcome. have you also been prescribed Prednisilone?

Also - Prof Shahata has actually told me he took Hydroxy himself when he had covid and it really helped him. Random but he is a real advocate for it.

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.