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Immune/NK cells pred thread #31

983 replies

VenusStarr · 13/04/2023 09:05

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!

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comingsoon786110 · 25/09/2023 20:20

@VenusStarr that's really interesting, I guess it has many uses then.

I am still on tacro but my last blood test showed my levels were low, just tested again on Friday- let's see what those results are. Because of weight gain I think they are struggling to get my dosage right as it's according to your kg.

I just want to try again honestly, I kind of miss it and I'm sick of using protection.

How was your Paris trip?

VenusStarr · 25/09/2023 17:38

Hi @comingsoon786110
good to hear from you. That's interesting about the metformin. Dr S put me on it last year for adenomyosis. (I've got low amh and no signs of pcos). It didn't help my weight sadly. But I do think it impacted my lining (I have no scientific evidence) but I had 3 cancelled cycles due to no longer responding to estrogen. I stopped taking it and tried a different protocol and my lining got to nearly 8mm. Have your bloods shown anything concerning?

Are you still taking Tacrolimus? I think my metabolism has slowed down since taking pred.

Thinking of you @mintsugi

How's everyone else? X

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VenusStarr · 25/09/2023 17:38

Hi @comingsoon786110 good to hear from you. That's interesting about the metformin. Dr S put me on it last year for adenomyosis. (I've got low amh and no signs of pcos). It didn't help my weight sadly. But I do think it impacted my lining (I have no scientific evidence) but I had 3 cancelled cycles due to no longer responding to estrogen. I stopped taking it and tried a different protocol and my lining got to nearly 8mm. Have your bloods shown anything concerning? Are you still taking Tacrolimus? I think my metabolism has slowed down since taking pred. Thinking of you @mintsugi How's everyone else? X

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comingsoon786110 · 25/09/2023 13:18

So sorry to hear this @mintsugi. Ive also had two losses on the immunes and you just want to give up every time!!

I was also at CRP on Friday for a review, wonder if we saw each other? I hope you're doing the best you could possibly be in this situation, I know its rubbish and heartbreaking and so hard to accept.

Update from me, Dr Jan has put me on metformin. Not sure if anyone else has experienced this since taking pred but my weight gain was ridiculous and he explained that all the meds im taking and the duration I have been taking them for has slowed down my metabolism. As a reference point, in just under a month I put on 7kg. He said that is definitely not healthy and has given me a low dose to take for a month and then Dr S will review is next month to see if I need to continue.

I don't have PCOS btw. Has anyone else taken this to control their weight gain? I have read a lot online it does bring your BMI down. My weight has now gone into the 'overweight' category and they are concerned about this.

clhiu · 25/09/2023 07:27

I’m so sorry hear this awful awful news @mintsugi absolutely no words for how the world can be so cruel at times 💔. I hope you have support and space to process, thinking of you ❤️ xxx

Lily1990 · 24/09/2023 22:03

@mintsugi I am so so sorry to hear that. It’s so awful and cruel that you are going through this. I am sending you love and strength ❤️ thinking of you xxx

Newbeginnings22023 · 24/09/2023 21:58

I was really hoping for better news @mintsugi, it must’ve come as a shock. I went through something similar last year. Saw the heartbeat at 8 weeks then a few days later started bleeding and lost the pregnancy. It’s an awful feeling. Hope you have enough support around you xxx

VenusStarr · 24/09/2023 21:39

Oh @mintsugi I am so sorry to hear this. That's absolutely devastating. There are no words buy I am sending you lots of love right now ❤️❤️ xxx

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mintsugi · 24/09/2023 20:48

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!

Newbeginnings22023 · 23/09/2023 08:26

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

VenusStarr · 23/09/2023 08:21

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

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Zest11 · 22/09/2023 22:07

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

VenusStarr · 22/09/2023 21:13

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

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Privatemedical246 · 22/09/2023 19:50

@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.

TheWeeLittleDonkey · 21/09/2023 21:25

@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 · 21/09/2023 21:13

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

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Newbeginnings22023 · 21/09/2023 20:30

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

@Privatemedical246 hope everything progresses well for you xx

TheWeeLittleDonkey · 21/09/2023 12:56

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

Lily1990 · 21/09/2023 12:06

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

TheWeeLittleDonkey · 21/09/2023 11:26

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 💕

VenusStarr · 21/09/2023 11:22

@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

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TheWeeLittleDonkey · 21/09/2023 11:13

@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.

VenusStarr · 21/09/2023 10:58

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

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Lily1990 · 21/09/2023 10:51

@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

TheWeeLittleDonkey · 21/09/2023 10:28

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! 💕

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