Immune/NK cells pred thread #31

[VenusStarr]

Hi all, we've fill up the last thread, so starting a new one. Will start tagging but feel free to add anyone I miss!

Hi all,

Thank you for the kind and supportive posts @clhiu @VenusStarr @Newbeginnings22023 @KtAgs @Privatemedical246 @HopefulH.

The bleeding was light and stopped within 24 hours. But it sent me for a spiral and I went to CRP for a repeat scan just 2 days after the EPU scan. Dr Edge was really reassuring, the hematoma looked much smaller, and hearing the heartbeat made me feel so much better.

I have a scheduled scan and intralipids booked for this Friday. It's been a tough week where I've been acutely aware of every pang and sensation, and every time I pee I'm checking for blood. All my miscarriages were between 6-8 weeks so this period was never going to be easy. There hasn't been any further bleeding or cramping though so I'm keeping my fingers crossed for some good news on Friday.

@Privatemedical246 clear blue early response tests were negative for me with this pregnancy, meaning I didn't start on the immune plan until after a missed period. But my blood hcg was tracking normally so either it was a false negative or the tests aren't as sensitive as they claim to be. I've heard good things about the boots early response ones. And on side effects, I'm also having awful insomnia on pred made even worse by the exhaustion.

@VenusStarr good luck with the IVF cycle. Did you choose to wait until Oct for the tests or did the clinic set the timing? I had planned on doing PGT testing but we got such few embryos that I decided not to tamper with them any further and just froze them as is. We had 2 cycles where 4-5 embryos all arrested on day 4. The clinic said it was highly unusual but wouldn't suggest a different approach either. I found the process very frustrating and after getting 2 embryos over 4 cycles, thought the process would move faster with superovulation. I know you've had good success with embryo banking before so I hope the cycles in Oct / Nov go really well for you.

@Newbeginnings22023 how was your baseline scan?

@KtAgs that's fantastic news, congratulations! Success stories on here give us all hope. Have you started tapering the meds yet, how are you finding it?

@Lily1990 I had private therapy after my 3rd loss. It took 3 attempts to find a therapist I felt comfortable with. I was in a very vulnerable place and aware of the risk of iatrogenic harm. The previous 2 I spoke to said some dismissive / insensitive things in our initial 'chemistry' conversation. But the therapist I went with was really wonderful and think I had 15 sessions with her, which helped me build myself back up. We covered the losses and the grief, but also broader aspects of my life and family that were revealing and helpful. I'm also doing acupuncture, I've had a loss last year while on acupuncture but I think it played a role in me conceiving this one when my follicles and lining weren't looking great. We did 2 sessions to get this cycle to work, one to grow the follicles, and one to trigger them, after CRP wrote off the cycle. I also like my acupuncturist and just find it nice to have the support and stress relief, if nothing else.

@clhiu really sorry the superovulation didn't work. It is really demoralising. And completely hear you on the cost and inconvenience of the CRP visits every cycle. It took me a while to conceive until a saline scan showed I had adhesions that hadn't come up on a normal scan, making conceiving physically impossible. My period had felt different for a while so I got the saline scan done. A surgery followed by 5mg letrozole and acupuncture to trigger seemed to work for me this time. I don't think I could've stuck with the CRP plan otherwise, it is just too consuming and costly.

@HopefulH good luck with this cycle. When is test day for you?

Hope everyone else is doing well, sending love.

That's great news @mintsugi I'm so sorry you had that worry but pleased that you got checked and Dr E was able to reassure you ❤️ I hope Friday continues to be positive news for you.

The timeline is set by us mainly. Partly because I'm terrified of starting treatment again and money. But because dh was so poorly, our consultant thinks his sperm may be compromised. So he needs both the sperm dna frag and a normal sperm analysis done. We've only done ivf but she is suggesting icsi because I did have 3 of 7 eggs fertilise. He's got one booked next week then his sperm dna booked for mid October.

I've just reached out to my acupuncturist. So weird that I last saw her so long ago, so much time has passed and very little (fertility wise) has happened. X

hey everyone! this is probably my LAST EVER message on pred thread!

i ended up getting a positive on testing day 10dp5dt after getting a negative at 7dp5dt. But regardless, I promptly got my period and it's all over for me.

I am adamant that that's the end - for IVF, for immunes and for even trying naturally - because the longer I stay in this "trying mode" the more I am putting my life on hold and after 4 yrs, I need to let it go (for me, not suggesting 4yrs is the limit for everyone).

thank you everyone for all the support and tips. I am really rooting (routing? not sure) for all of you. your dedication is super impressive and I think you are all wonderful people.

BEST OF LUCK XXX

@nottsgdns sending you positive vibes as you move forwards and onwards with your life. I hope you can feel super proud of everything you have endured and coming out the other side - knowing you did everything. Go and enjoy life! Xx

@nottsgdns thank you for coming back and saying goodbye, I always wonder what happened when people disappear 😊

You sound at peace, I love that. I can totally resonate with how you're feeling and taking the decision to live your life, it sounds very freeing. Wishing you lots of love ❤️ xx

@nottsgdns thank you for sharing your story I hope you are okay and definitely sound at peace now.

@mintsugi glad your scan went well. I'm now confused. I carried on testing and now at 13dpo getting faint line on a wunderfo and now a really faint line on clear blue (I hate blue line tests though I find them so unclear) and now don't know whether to restart my meds in the hope it will progres. Or just give it another day or two and see if the lines get darker/obvious then restart the meds. I'm thinking to continue pred as that doesn't effect period whereas cyclogest can delay my period coming and I don't want to do that if it is a chemical again.

Hi all, I haven’t posted in here in quite sometime, but I thought I would incase this helps anyone.

Between October 2020 - Jan 2023 I had 5 miscarriages. I have no children. After the 5th we decided to take time off trying because it was all getting too much. We also had long gaps in that time while waiting for results and appointments etc. it’s awful how quickly the time goes isn’t it…?

I’ve had counselling which has been so incredibly helpful, and I have spent time just being happy in a couple with my husband which has really helped my headspace.

At the time I was 31, I’m 32 now so I will caveat that with saying I definitely had the luxury of time which I realise was lucky and I can fully understand why some people don’t feel they can take a break.

Anyway, the reason I am posting is because I had a hysterscope yesterday under a different doctor, but a very well known one in the field. I have had so many ultrasounds, some when pregnant, some when not and no one has ever seen anything wrong with my womb from them…

But the hysterscope actually found I had a septum which is something I was born with. I was told by the doctor yesterday that for me it might well explain all my miscarriages because the reason mine was hard to see on ultrasounds is because it was at the top of my womb, however she did say it was effecting the shape and she’s now fixed it so it’s domes as it should be. It was also blocking my tubes and making the entrance very small which she says can cause miscarriages.

The reason I wanted to post in here is because 1) I wanted to post before I tried again. I didn’t want this to be a post where it was like “well this will definitely fix it, I’m now pregnant” etc, because let’s be honest, it might not. I might still carry on having miscarriages… but 2) and this is more important: miscarriages 3 and 4 for me were under Dr S.

I know he has helped so many women, I really do. I’m sad I wasn’t one of them.

But for me the NK results were boardline on his own scale, and when I had the first miscarriage under him he tried to up all my medication. I felt really uncomfortable with this because my results had been borderline and not cut and dry. It felt like the costs were spiralling and I wasn’t convinced that it was the cause for me.

After speaking to two further very, very well respected doctors in this field and showing them all my testing results, they both independently of each other said that for me it was highly unlikely that NK cells were causing this.

I wanted to post in case anyone else has a doubt in their mind. Please advocate for yourself. Please don’t be scared to get a second opinion. You’re not insulting anyone. There are so many fantastic miscarriage specialists in this country were truly lucky.

As I said, I know Dr S has helped so many people, and I haven’t come here to say he’s shit and no one should believe him because there are so many women in here who have posted testimony to him helping them. I met some of them in his clinic who were clearly really helped by his work. I was unlucky I wasn’t one of them. But I also didn’t feel heard by him when I told him my history. I felt dismissed and when my results came back borderline for me personally it didn’t give me hope that his medication would solve my problem.

Research into miscarriage is chronically underfunded. It’s so incredibly unfair for woman like us that a lot of this is all a guessing game.

For me, this is the first time in 3 years I’ve actually had hope. I’ve actually had someone say to me “look I have found this thing that’s been missed, and I have fixed it for you”. If nothing else it’s given me a huge feeling of relief that I’m not to blame, which obviously I wasn’t… but you know how it feels…

I just wanted to post this incase there is someone reading this who has a slight doubt. And to say that a second opinion is always worth it.

Hopefully for me this will help. Maybe it won’t… who knows… everything about pregnancy is just so fragile.

Hi @mintsugi thanks for checking in. Very pleased that all went well your end, it’s lovely to hear positive stories xx

My baseline scan is next Friday so I’m just continuing my supplements until then, see what happens. My DH had a prostatitis flare so he’s on antibiotics once again, hoping that’ll help clear things up for him.

@nottsgdns I know exactly how you feel and I think we all know when enough is enough. Wishing you all the best for the future. We are all so strong and have gone through so much xx

@TheWeeLittleDonkey thanks for sharing your story. Each person goes through such a unique journey that it’s hard to find a common denominator on what could help with infertility. Some try naturally for years until it works (or doesn’t) others have success with IVF, some don’t, some swear by Dr S’s interventions. It’s really hard to know what works until you’ve tried different things. Hope the procedure really makes a difference for you xx

Hope everyone else is doing well. @VenusStarr wishing you all the best with the testing and new round xx

Yeah for sure! I really wish there was more funding. It’s crazy to me that 50% of recurrent miscarriage “doesn’t have a cause”.

Of course it has a cause, but the cause hasn’t been found yet, that’s all. I really hope that the advances in medical science with stem cells being able to create embryos really bolster miscarriage research and that more reasons can be found and more women helped.

I really hope your baseline scan goes well! 💕

@nottsgdnsthank you for saying goodbye, sending love and happiness to you. Onwards and upwards and enjoy life! xxx

@TheWeeLittleDonkey that's really interesting, thank you for sharing! I'm worried it's the case for me too that something else is wrong (just had a chemical on Dr S's plan and he has now increased my meds which I'm worried about). I have a few questions if that's ok! Firstly why did you have the hysteroscope if your scans all looked fine - was it incase there was something that was missed? And which expert Drs did you see - and were they the ones to suggest the hysteroscope? And finally were your NK results not in the "high" zone then? Mine are 245 for total NK count and activity slightly elevated too (1.19). Thank you!xx

Thank you for sharing @TheWeeLittleDonkey ❤️ I hope the septum surgery helps (I have an idea who you're under now). I've had 2 hysteroscopies and only found and removed a polyp, second time nothing was found - described as perfect annoyingly.
I'm sorry you've had 2 losses under Dr S, I have too. But my activation levels are sky high so I suspect it is my body attacking the pregnancies and the meds not being strong enough.

@Newbeginnings22023 thank you. Half dread and half getting a bit excited.
Hope your baseline scan goes well xx

@Lily1990 - really happy to help 😊 I was under Prof Quinnby under Tommys. I moved over to Tommys after my two MC because I wanted all the grief I’ve had to help someone. This means I’ve also had Doxycycline (not tried since this it was only last month), because that’s something she feels might help some women and all my tests had come back fine.

She said with my history she would like me to have one but couldn’t because the NHS wait times are so long.

Whats interesting about Quinnby is that she isn’t someone who dismisses NK cells, she just said she doesn’t think that, that was my problem. And so for me it might cause more harm. I had my 5th miscarriage under her, but it’s not that much of a shock because nothing had changed so to speak. I had progesterone and that’s it, but the three pregnancies I’ve had have last longer and developed further then when I was on NK treatment. The 5th MC was in the second trimester and I saw a heart beat 3 times, but for me it just wasn’t growing properly, and this has been the case for the two miscarriages I have had scans for that have shown something on the screen. (1st was at 7ish weeks by no scans, two under NK Protocol were both around 6 weeks, the other two were both between 10-14 weeks).

I then had my hysteroscopy under Prof Regan in London. Essentially by this point I’d been on the NHS waitlist for 6 months and heard nothing. I picked Regan because I’d seen loads of interviews with her and she just seemed super knowledgeable.

She also thought I should do a hysteroscopy, and because I was private I was able to have this done by her, within 6 weeks.

The total cost of this was between £3,000 and £4,000. It was 2x consultation fees with her - £300 each. £2,700 for the surgery. And just under £200 for the anaesthetist.

The reason they both wanted me to have one is because I had testing on one of my miscarriage which came back negative and I had literally nothing in bloods other than low vitamin D (which I’m now on a supplement for).

They both said that things can get missed on ultrasound scans because of the nature of them. They’re grainy and hard to see. Having an internal scan removes that and so it allows them to know for sure one way or the other and it was sort of the only thing left… I was running out of options.

Regarding my NK results, I can’t remember of the top of my head (sorry!) but there were two and one came back normal according to his range and the other came back elevated but not like astronomically elevated.

I personally always think it’s worth getting a second opinion if you have concerns. But I just want to say again, he definitely does help people, so this wasn’t meant to be a bitch about him and his work or NK cells, just a general, if you have concerns definitely don’t worry about getting a second opinion, because maybe it will help. Maybe it won’t, but I am glad to have had this ruled out now.

@Privatemedical246 sorry I missed your post, I'd definitely stay on the pred, you should gace your own progesterone too. Can you get hold of a boots early test? I heard they're good. Fingers crossed for you x

Hey @VenusStarr I really hope you’re doing well and I’m so sorry to see you’re still posting in here. I’m so sorry they still haven’t found something that can help you. I really, really hope they do. If life was fair, rather than the random shit show it is, they definitely will be able to help.

Good luck with your next IVF round. I’ve got all my fingers and toes crossed for you 💕

Thank you so much @TheWeeLittleDonkey this is super helpful. Lots to think about! And I'm so sorry about your losses - second trimester is so awful especially.

@VenusStarr good you can rule out uterine problems and your sky high NK cells suggest this is the right treatment. I feel like I'm just waiting for another loss on Dr S's plan (when can finally TTC again) and then I'll try some more tests 🙄

Good luck for TTC again @TheWeeLittleDonkey keeping everything crossed! xx

@Lily1990 thank you so much - you too 🫶 I really hope your next time TTC works out x

Thank you @TheWeeLittleDonkey 🙏🏼 keeping everything crossed for you @VenusStarr. Will keep you posted xx

@Privatemedical246 hope everything progresses well for you xx

Thank you @TheWeeLittleDonkey ❤️ I hope for both of us we have positive news moving forward xx

It's really hard @Lily1990 I hope the change is protocol is what helps. Did you say you have to wait?

🙏 for you @Newbeginnings22023

I don't know if any of you heard a while ago but the government were looking at doing a pilot to allow parents to apply for a certificate to acknowledge a miscarriage before 24 weeks as part of miscarriage care reforms. I applied for the pilot but was told I wasn't selected. But this week I got a message to say that I could do it. So have applied for one for our boy and girl (the only ones we named) 💕💙

Love to all xx

@VenusStarr i haven’t heard about this, but what a fantastic step in the right direction. I’m so glad you’ve got them :)

And thank you 💕

@VenusStarr I haven't heard about this but it sounds lovely and I'm pleased the government are taking steps to recognise what people need support with.

My line has got darker today so here I go again. I feel so anxious but I know there is nothing I can control right now.

I'll let you know when yhe certificates arrive @TheWeeLittleDonkey @Privatemedical246 🥰

Gentle congratulations @Privatemedical246 ❤️ one day at a time. Are you going down for intralipids next week?

My acupuncturist is adopting (second time!) So going on leave right during when I think we'd be doing the second cycle for 3 months. I've got someone else I used the first time she adopted and couldn't do my transfer (and that one worked), so feeling OK.
All my bloods are booked in. My gp has given me an AMH request form but said he can't guarantee they'll agree to do it. Hope they do, need ro save all the money we can!

Does anyone know if Dr S uses low dose naltrexone (LDN)? I'm tempted to ask Dr E when I see her in a couple of weeks. Or see if my ivf clinic use it. I'm having my thyroid antibodies tested, not had them done before - has anyone else had them done? I'm on 75mcg of levothyroxine (only took 25mcg initially but have had to increase it twice to keep it under 2).

Hope everyone is ok x

Hi all,

Sorry I have been quiet. I'm sorry to read how there are a few of you still here. Tentative congratulations to those of you in the early stages of pregnancy.

This is a really crappy update and a bit of a delayed farewell and good luck to you all from me. We took a break, went on holiday etc and felt great. Did a FET a few weeks ago and it resulted in a chemical. Didn't follow the Dr s plan because I didn't feel convinced with him. He basically said he didn't know why the previous cycle failed and that we could try the same plan again or add hydroxy on an empirical basis. Perhaps some would say "I told you so." But equally at our first consultation he was hammering on about how bad my amh was but at the last follow up he said it wasn't an issue because I got 9 eggs. There's one embryo left but v poor quality so we are done. My husband won't entertain more IVF so that's it for us. We do have our amazing son, I am incredibly lucky but this has completely broken me. How foolish I was to think that a second child would be easier. 5 transfers since him which have brought a cocktail of failures, miscarriage and CP. I'm gutted my son won't have a sibling and with no cousins, he will have a life of loneliness. I'm sorry this is a rubbish update. I'm not sure who reads what but I thought it could be frustrating for some when they read threads and find people 'disappear'and you don't know the end to their story.

I really really hope things work out for everyone here. You are all such warriors and deserve so much. Good luck xx

Oh @Zest11 💔 I've been wondering how you are. I'm so sorry to hear about your recent FET. It's heartbreaking. Absolutely no one is judging your decision, please don't be hard on yourself. You aren't foolish. I hope in time you can find some peace in the decision to stop trying. Infertility, losses and ivf is such a cruel process and I'm believing more and more that the outcomes are down to luck more than anything, so nothing you did or didn't do made this happen.
Thank you for coming back to say goodbye ❤️ sending you lots of love xxx

Oh @Zest11 really sorry you’re feeling this way. Like you, I always thought the second would be easier but it’s been tougher than ever. This is our last chance at IVF too then we’re calling it quits. The only thing I would say is your lovely boy won’t have a life of loneliness. He’s got lovely parents but also, he’ll surround himself with friends who’ll replace this feeling for him. I say this because I have lots of friends who are only children and they genuinely don’t feel like they missed out on anything. I have an older brother and we don’t have a relationship at all sadly (nothing bad, we’re just not close at all) so I now have 3 best friends who are like my sisters, and they’re my world. Funnily enough, they each have an older brother and are in the same situation.

Whatever happens, our children will be ok. I say this to myself every day xxx

Hi all,

I had my 8 week scan and intralipids at CRP on Friday. All looked good and the heartbeat was strong.

But out of nowhere I had extremely heavy bleeding last night with cramps and clots, that went on till morning hours. It seemed like a foregone conclusion but I went to the gynae ER this morning anyway where a scan confirmed a miscarriage.

We're still in shock. This pregnancy was going better than my previous ones, and I had made it past 8 weeks for once.

I'm still processing this, physically and emotionally, but we've now had losses on both the St Mary's plan (septum resection and blood thinners) and CRP's plan (immunes). I don't think I can keep putting my body through this and we are going to look into surrogacy or adoption as potential options once the dust has settled.

Hope everyone's doing well and have had better weekends than me!