Immune/NK Issues - aka Pred Thread no 25!

[Eeviee]

An introduction to this thread. It has been running for many years and has proved a saviour for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

Discussions cover immune issues, NK (natural killer) cells, thyroid issues, PGS and many many more.

Welcome to the group no-one wants to be in 

Tagging people from the previous thread but please tag anyone else I've missed.

@KittyKatSmile @FrannyAnny82 @HoldingOn2Hope @Crystal2020 @Countrygirl220 @HarrietM87 @williteverhappen @Wishing5tar @hrtbrk2 @KtAgs @Gooe @peperethecat @zoe16 @williteverhappen @mezgaski @VenusStarr
@Ultra26 @ceebee21*@Luckyducky2 @weddinghelp1* @Hippo20

@Sophfr17 Dr S is controversial in what he does mostly because of the medications he uses, but the whole field of reproductive immunology is highly contested within the world or medicine and there's always disagreement. But he does have a high success rate in what he does, it hasn't worked for me yet but know it has for many many others. I suppose you just have to research and do what you feel is right for you.

@Naticle thank you, your story has brightened up my day. ❤️

Thanks for your understanding.
I am so happy so he has such high success rate, and to be honest, I may likely see him in the future, if he is my last option.

But I am suspiscious by nature. I am a Dr in Biology and an Editor/Reviewer of scientific publications. So on a daily basis, i evaluate research papers and have to verify everything (it is often quite ugly). So I am always mistrustful ^^.

I will keep an open mind of course!
xx
Sophie.

@Sophfr17 this is your body and your money and your life. You need to do what is right for you. Just because two medical professionals have a different opinion doesn’t mean that one of them is a charlatan however. This is a new and developing area of medicine and there remain a lot of unknowns.

I had 3 miscarriages within 6 months at age 29-30 and the NHS standard tests showed no issues. I went straight to Mr S, conceived quickly on his plan and had a healthy son. Then conceived again, outside his plan, another mc. Conceived again on his plan and I’m 20 weeks and all is well. It doesn’t seem like a coincidence to me.

However it didn’t come cheap and there are other options and other doctors offering similar treatment plans, so well worth doing your research.

Yeah I am so so sorry I said that.... :( i am just very bitter, and some days I am fine..
@HarrietM87 Your successes are definitely not a coincidence, and I am truly happy about the chance you are having.

These situations are so everwhelming, I am still digesting all the bad news form the last 12 months...
To be honest, i think we are the actresses of our own success, which is why it is crucial to get the most from women' experiences.

Sorry again...

@Sophfr17 stop apologising to us! Everyone on this thread has been though trauma and we all know the anger and disappointment that goes with it.

It's hard Just be kind to yourself.

The whole time I was under his treatment I was too embarrassed to tell anyone because Robert Winston had made some disparaging comments about his treatment. Totally get the suspiciousness (if a word).

X

Yes - no need to apologise @Sophfr17! We're all mamanges here! ❤ that word BTW.

As a fellow clinician and confessed epidemiology geek I do think it's bad clinical practice not to publish your data more freely. But I guess he's private and as we have all said, at least he's doing something. I reckon it won't be long until hydroxy is used more widely in practice - especially when they publish the data from the trial running into its effectiveness in treating APS at Guys. And steroids are already used in the NHS. I would also pay just not to go back to my EPU. I was in the middle of writing a complaint about my local one when covid hit. Just before my last ERPC, the female gynae doing my op commented on needing my cervix monitored in my next pregnancy. Then said, 'Well, if you make it to 12 weeks'. Bitch.

I'm so sorry you've not got more clarity @HoldingOn2Hope. That midwife sounds ace though. It makes all the difference when you get a understanding health care professional. Have you got anything to distract yourself with until the scan?

@Crystal2020 - ive been thinking about dime bars since you posted. Has AF shown up?

Lots of love ladies Xxx

@KtAgs haha that wasn’t me with the Dime bars, it was @Wishing5tar. Would kill for a Dime and a cuppa though!

All so so confusing @HoldingOn2Hope. I think it’s a good decision to do the epu appointment next week as you might be able to get some more clarity then. Keeping everything crossed for you xx

Oh sorry @Crystal2020. My bad. I want all the chocolate today. I'm hungover. Xx

@Sophfr17 you don’t need to apologise! Everyone has been through so much. At the end of the day you can do whatever and try whoever you like. I had similar concerns re Mr S and there are lots of aspects Im unsure of/not totally happy with, but at the end of the day I got results 🤷🏼‍♀️

Also just to note that Mr S is an NHS consultant at Epsom & St Hellier and gives his NHS patients identical treatment save for the intralipids, so it’s not a question of NHS v Mr S - practices within the NHS differ widely and people have different views. That’s not necessarily helpful for people who want conclusive answers, but I think we’re at least lucky to have a few options. Only a few years ago we’d have had no possible answers.

Been meaning to say Dr S said I should now take Cyclogest x2 per day and he doesn’t mind if it’s morning and night or both taken at night. I didn’t ask at the time but afterwards I wondered if he has changed everyone’s protocol or if it’s specific to me? Not sure if it’s been mentioned on the thread and I’ve missed it. Not looking forward to the additional bloat! X

@KtAgs wow what a total bitch. You really should complain. That’s a disgrace.

I’ve been lucky to have had good EPU experiences, but my appointment with the RMC consultant at my local hospital was awful. She told me there was nothing wrong with me and I just needed to keep trying, and not to get so upset as they’re not really babies at 6 weeks pregnant and I should just think of it as a bad period. There were about 4 medical students in the room and I just burst into tears. The last one had been a mmc so I’d had to have an MVA (erpc under local) which had been incredibly painful and distressing and in no way like a bad period! That was what convinced me to go to Mr S tbh.

Just caught up, had an afternoon making soup!
I think I'll have to take each day as it's comes and find distractions.
@Sophfr17 I completely understand your concerns as other consultants I've seen have raised eyebrows when I've mentioned him, equally he did the same when I told him I had an appt with Prof Q however his success steered me towards him, had Prof Q not had been on nhs waiting list and not wanting me to sit on the trial I was going with her for sure. You have to do what's right for you and a lot of us end up exploring these paths when we are desperate. I know for sure that's how I felt.
This one may end badly, it doesn't mean I will lose faith in Dr S but I may in the intralipids!

Just out of curiosity why doesn't Dr S check nk cell levels once pregnant? Wouldn't that give more accurate results ?

@Naticle I should be 7 weeks today. But measuring 6 on yday's scan. They EPU scan measured me at 5 and half'ish on Tuesday.
I don't feel pregnant if I'm honest, that bloated feeling isn't there, boobs no longer sore and I feel a headache coming on which was the sign for me in all my mc's. I think it's when the hormone levels are dropping it can cause headaches.

@HoldingOn2Hope I’m sorry that things aren’t clearer. It’s so tough waiting. Really hope the next 10 days go as quickly as possible. Keeping everything crossed for you xxx

@PurplePansy05 sorry for delay. I did not see Me A under BCRM (he used to see x people privately at the Spire in Bristol) and by the time BCRM was up and running I had had 3 mcs and was under the RMC next door instead & saw him that way. So I can’t compare really as I’m just comparing NHS v Mr S and obviously there’s no comparison as my RMC shut down during Covid. He has a really good manner with patients and is very supportive. People like him (as do I). I think you would feel supported. I am not sure what availability of appointments are like etc. He also went beyond his usual treatment plan for he and I appreciate that, but I have to say I wonder if I needed steroids from ovulation & that’s the key difference. Good luck whatever you decide. Xxx

@Wishing5tar I’m sorry it’s a bfn. Totally rubbish xxx

@mezgaski thank you! AF showed her ugly face today so round 2 of letrozole begins tomorrow. I guess with each passing cycle I just wonder whether this is actually my path in life or whether the universal is telling me to move on 🤷🏻‍♀️ Just having a little wobble but I do think after 3 years of heartbreak, why does it have to be this difficult?! 😔

I totally totally get it @Wishing5tar and I often feel the same way. It’s been 2.5 years for us now and we only found out about the NK cells in Feb so I feel like we’ve wasted so much time... My husband is a really positive person but recently I’ve noticed him saying things like “if it ever happens” etc and it freaks me out. If his hope is now waning it does makes me think this could be a lost (and very expensive) cause. But then I berate myself that thinking like that and stressing could be stopping it from happening...total vicious circle! I think with the SO we just need to keep plugging away at it and keep in mind that success is more likely from cycle 4-6. I’m trying to take one day at a time and I’m doing my best to pull myself back to the present instead of letting my mind run away with itself (much easier said than done!). We all understand how you are feeling and I think it’s only natural for us to have these wobbles...would almost be weird if we didn’t. X

@Crystal2020 I’m pleased at least one other person understands 😘 it definitely is a vicious cycle of worrying too much & trying not to think about it 🙈 we first saw Dr S in mid-April last year so I feel like it’s been such a long time now without any results. One of my closest friends is due her baby soon so shopping for baby clothes/presents doesn’t help and another of my friends said they’re ready to start trying (which is a big deal for them as there marriage was at breaking point last year over whether babies were on the cards or not!) and I just get this gut wrenching feeling that it’ll happen so easily for them and then I’ll be the only one left behind and not able to contribute to the baby chats 💔 and lets not even start on the talks about when second babies will come along for the two who already have little girls 😢

I guess I’m just deeply exhausted both emotionally and physically. It’s so hard to switch off from ever thinking about what the next step is, when the meds start again, what if this doesn’t work, or what if it does work but ends in miscarriage again etc etc etc. Sorry for being a negative Nancy - WFH and spending all day alone isn’t great for my overthinking!

I hope everyone is doing okay? Sending virtual hugs to everyone who may need one 💛💛💛 xxx

Yes it’s really hard on the friends front @Wishing5tar. I was speaking to my friend earlier and she and I were due 1 day apart this coming September...and I find it really tough. I’m sure she does too and probably doesn’t know what to be saying to me! I have definitely distanced myself from a lot of people/situations and it’s one of the aspects I haven’t minded about lockdown as I haven’t needed to make excuses to avoid baby showers and the like! Agree with you it’s really really really hard to stop over thinking because absolutely nothing is a guarantee! It’s very frustrating. Has Dr S had any advice for you or did he just suggest moving to SO? Hopefully you can start to focus on your next scan now and it will be a great one for you ❤️.

Been thinking of you @HoldingOn2Hope and hoping you’re as ok as you can be. Xx

Hello! My first time on this thread. I’m under Dr S. I have a 5 year old daughter and have had had 6 miscarriages since (varying from 6 - 14 weeks and most recent miscarriage was under Dr S). 2 were tested and no chromosomal issues. hyperemesis gravidarum with every pregnancy. I have borderline-high NK Cells but will be on the complex plan if I try again due to miscarriage on the previous plan and my miscarriage history. Wondering if anyone knows what success rate is when hydroxy is added after having a miscarriage on steroids under Dr S? Try to decide whether to try again - not an easy decision because of the hyperemesis, never mind cost, the trauma of it all etc! Also, anyone that’s had hydroxy, has it helped with nausea/sickness? Thanks 😊

Welcome @NICK7nick7 but sorry you find yourself here 😔 I’m on Dr S’s complex plan too. Dr S doesn’t share his success rates but quite a few ladies on this thread have taken hydroxy and went on to have successful pregnancies so here’s hoping 🌈 🤞🏽

I believe it’s the steroids that suppress/hide pregnancy symptoms more so than the hydroxy but I could be wrong xx

@NICK7nick7 I had a further miscarriage whilst under steroid treatment alone. Hydroxy was added and I was successful.

@Wishing5tar thank you xx

@naticle thank you, that’s really reassuring to hear. I think I need to try again since something new is being offered, dreading it though too as I had told myself never again after last time!! Xx