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

@Jorun hey, my intention wasn't to make anyone worry so I'm sorry if this has made you panic. On a plus it's only happened with me, non of the ladies on here have had a similar experience. I still trust his methods and process and would consider being back on his plan if I was to go ahead with ivf on nhs. I'll be honest the only reason I've had a consultation elsewhere is not because I think it will result in me having a baby but they fact that they will monitor me a lot more but then that comes with a hefty price too. I've also not really had any contact with the clinic following my mc which has disheartened me. I expected them to email or call and advise what's next but I've have to do that and chase them.
When you google him in comparison to other top Dr's who do similar treatment he is one of the best. I will make an appt to see him before I make a decision about my next step and hoping to get OH's dna test re-done.
Have you already had a consultation with Dr S? If so stick with him and give him a chance.
If i move to the next clinic but a lot more disruptive to our lives as it means moving to London for a few weeks maybe months as the consultant sees you daily 😑 they all have their pros and cons xx

@Wishing5tar I asked Dr S this Q too, he will support you during ivf with nhs, not many clinics will. I know the 2 I've contacted won't. That's Dr Gorgy and Dr Taranissi.
If I went for ivf with nhs depending on the results from my mc I'd stick with Dr S. if I had to have ivf privately then I'd probably move clinics. Does Dr S even do ivf?

@Jorun sorry to hear you’re having a hard time adjusting to the hydroxy. I can’t say I noticed any obvious side effects when I started taking it back in July last year, or maybe my husband is just now used to my crazy mood swings so just thought it was normal 😂🤷🏻‍♀️

Fingers crossed you manage to de-stress and relax before your IVF starts. My acupuncturist is reopening next week and I can’t bloody wait 😍👏🏽

Does your IVF clinic speak with Dr S directly or do you just tell them what your protocol is and start the meds after your transfer?

@HoldingOn2Hope wow the potential new clinic sounds intense 🙈 Would this be IVF too or just the immune protocol? How come they see you everyday?

Sorry to hear Dr S’s clinic have been so shitty in their post-MC care 😞 I do find that any appointments/next steps seem to be instigated by us, the patients and I often wonder if I didn’t book a follow up appointment for a refill on my meds etc whether they’d actually notice 😂

I don’t think Dr S does IVF personally. It’s good to know he’d support IVF on the NHS though ☺️ Would this just be local to him in Epsom/London or any NHS treatment?

@HoldingOn2Hope, I think I will give him a chance, I've had 2 consultations over the phone with him, although during the second one, he had to phone me back as one of the nurses messed up my plan which annoyed him, so when he phoned back 10 mins later I was very rushed.
It's interesting that other clinics don't support IVF on the side, I guess it depends on the level of greed? I've read some pretty horrible stuff about Dr Teranissi's clinic, and if Dr S doesn't work out, will go to either Chech republic or Greece for treatment.

@Wishing5tar, I've told my clinic about his plan, but they are against me having steroids. I may have to go ahead and not mention anything else.

Can I quickly as you all, last meds I had from dr s was through Pharmacierge, I would like a normal private script, because they will be taking a massive commission. Do you guys all have meds from dr s from this company?

@Jorun if you see Dr S for a face to face appointment then you will come away with the meds there and then. If I’ve ran out, or at the start of lockdown when it was a telephone consultation only, he’s sent me a private script through the post because pharmacierge would take too long to reach me in the north east. I then just collected the meds at my local pharmacy at a fraction of the price so I know Dr S is making a buck on the meds he sells us 😏 if you ask he may provide you with a private script instead.

As expected, a BFN for me this morning. Not surprised as I knew we didn’t have the best sized eggs / lining this month but still disappointed. I guess we’re heading into month 3 of superovulation 🤞🏽 X

On the meds, if Mr S won’t give you a private script then you might be able to get it from your GP if you have a sympathetic one. I have friends from a previous pred thread who got theirs via their NHS GP. Mine wouldn’t but we have a private GP at work who would have done it. In the end I just got them from Mr S as wanted to avoid going into a pharmacy while shielding, but if there’s a next time I’ll definitely do that.

Sorry about the bfn @Wishing5tar. fingers crossed for third time lucky!

Ah sorry @Wishing5tar. BFNs suck. I guess you can still test in a couple of days?

@Wishing5tar, so sorry about the BFN! That sucks..
Re the meds, feeling like a total cash cow. No wander they can afford new fancy doors with gold knockers! :D I will try to get a private script but not holding my breath

@HarrietM87, that was a nice GP. I will need Fragmin/steroids/further hydroxy, doubt my GP would give them :(

what are your opinions on aspirin? Listened this morning to Fertility podcast and the consultant on the programme was saying she never prescribes aspirin as it can impede implantation. I read research before about this very topic, many clinicians are moving away from aspirin. But when I asked Dr S about it, he just told me it's rubbish.

It’s worth asking anyway @Jorun - I know several people where their GP prescribed them once they’d had a prescription and plan from Mr S. seems to be the luck of the draw though annoyingly.

On aspirin, when I was researching recurrent mc before finding Mr S I found loads of success stories online where that was the only change people made and they had a successful pregnancy, so I guess it must work for some people. Mr S does prescribe it and loads of people have success on his plan so it obviously doesn’t prevent implantation. Personally I’ve had to stop taking it in both pregnancies after spotting, first time at 5 weeks and second time at 10 weeks, so I don’t think it does anything beneficial for me personally. It’s really hard to know isn’t it.

It's so hard to know isn't it @jorun? For me, my periods have been quite mucousy post miscarriage but the asprin has helped that. I feel it's probably a better 'bed' for an embryo because it will have regenerated more if that makes sense? It's regularly prescribed for people after still birth and with placenta problems too. It's madness we don't know for sure. I'm more worried about progesterone affecting implantation. Let's face it - that's what a majority of contraception is based on. I find that confusing to take it from ovulation even if it does make the uterus more 'fussy'. Xx

@Jorun at my consultation with professor Brosens for my nk cells follow up he advised against taking aspirin as he said it could affect implantation. He said for some it could help but he was pretty adamant that I shouldn't take it as the type of miscarriages I've had (no heartbeat but mmc) he felt aspirin would be a hindrance.

It's so hard to know what to do for the best x

@ktags, I wouldn't worry about progesterone, the way it exerts it's effect as a contraceptive is by creating a mucus plug which makes it impossible for sperm to get to the egg. But it also has to be taken at very strict times, if you are late taking it by only a few hours you then need to use extra protection. From the fertility point of view, progesterone prepares the womb for implantation and is crucial in being able to get pregnant and maintaining pregnancy.

I had mucousy period for two months after miscarriage, I think it's the body getting rid of remnants 🥺

@VenusStarr, that's interesting!!! The plot thickens. What am I to do...hmmm, will need to do more research.

Btw, who's the best nurse to deal with at his clinic? One of them over been dealing with messed up my plan and also took two days to answer an email...

@Jorun does her name begin with N by any chance? 😑😑😑 I like to speak with Geri I just didn't she gets things done and is always there to answer q's. Laura is nice too.
Regarding the meds, even if Dr S sends you a prescription for you to get meds yourself he charges £20 admin fee per med. I had to pay that during lockdown for my steroids.
My GP is nice so I'll going to try and see what she will prescribe, my nhs consultant has already prescribed me cyclogest and aspirin so that's been on a repeat prescription from last year.
Aspirin - I've had mixed msgs too. Nhs consultant prescribed it as a precautionary, Dr S does too. My appt at Bham Women's last year I was told to stop it and also when I saw a consultant at the Tommy's recurrent miscarriage clinic.
But then again I've also been told progesterone definitely isn't an issue for me and won't help me but I still use the cyclogest as when you get a bfp it's almost like a 'let's try it all' desperation plea!

@Wishing5tar I'm sorry it's a bfn and wish you better luck next cycle. It really sucks I know!
I had a negative test this morning following my mc a couple of weeks ago and although I was relieved that things are getting back to normal it made me quite sad to see a negative test. I would have been 12 weeks this week and had a good cry.

I've had to buy so many baby presents in the last couple of weeks it's awful to shop for babies. My neighbour ha she's little boy the same day I had my MVA procedure and I've been putting it off to buy a present.

@Wishing5tar I'm sorry it's a bfn and wish you better luck next cycle. It really sucks I know!
I had a negative test this morning following my mc a couple of weeks ago and although I was relieved that things are getting back to normal it made me quite sad to see a negative test. I would have been 12 weeks this week and had a good cry.

I've had to buy so many baby presents in the last couple of weeks it's awful to shop for babies. My neighbour ha she's little boy the same day I had my MVA procedure and I've been putting it off to buy a present.

Ahh sorry to hear that @holdingon2hope. It is always a bit sad to get a negative test after a positive, even if you know it's needed. The baby present thing sounds hard. Cry all you want lovely. It's worthy of tears.

I'm the same with progesterone as well. I really don't need extra. All my miscarriages are missed, and I agreed with Mr S to have 200mg instead of 400. Xx

@KtAgs all mine have been missed miscarriages too. Even this one I wouldn't have known Things were going wrong it's only because I had the early scans.
What plan are you on? SO with hydroxy?
I'm going to wait for the genetic testing results to come back and make a decision about the next stage.
Xx

@HoldingOn2Hope, I wonder with 20 quid admin fee if it still works out cheaper? So if my GP is kind enough to supply some of the meds, are they ok with that or do they kick up a stink? Gosh, as if this thing is not stressful enough, I feel like treading eggshells .
Thanks for recommendation, do I just address an email to Geri when I'm emailing? Not to sure of the system

I'm sorry to hear about having to buy baby presents. You guys are better than me. I avoided seeing my baby nephew and niece for over a year (they live in Scotland). Couldn't face it. Hubs had to organise flowers/gifts without me.

@HoldingOn2Hope - I'm not on SO, but hydroxy, pred and only on my second cycle of trying at all with Dr S. Both my early miscarriages had chromosomal abnormalities and I feel the progesterone prolonged my pregnancies. I'm glad I get early scans if I get pregnant again with Mr S - I can't bear the thought of going back to my local EPU.

@Jorun - I get my aspirin and cyclogest from my GP. She might prescribe me steroids but I don't think she would the hydroxy. You might be able to get an online prescriber to do it? I think you should be open with MR S.. I told Mr S I don't agree with the progesterone and said if he insisted I take it, I wanted a lower dose. He said that was fine. I hear you on the shying away from all things baby related. I blanket refuse to do baby showers. I let my mood dictate whether I can handle gifts for babies. You have to protect yourself how you can

@KtAgs, solid advice, thank you.
Regarding chromosomal abnormalities, just a thought.. if you ever do IVF,would you consider PGS? It's not fail proof, but I feel like it's still gave us a better idea of how many of my eggs were normal. My clinic told me to expect 60% of the eggs to be abnormal from my IVF cycle. I had three good ones out of 5 that made to blastocysts. I think that is pretty good going...but then I miscarried one of them..my NK cells are through the roof though, it may have had something to do with it.

@Jorun @KtAgs I've just this minute got off the phone to my GP, she advised that as long as my nhs consultant has access to all my test results from Dr S she doesn't she why they won't prescribe the meds. So I'm emailing her a copy of the testing and like @KtAgs said I'd be upfront about this to Dr S that I have some of the meds on the nhs. I can't see it being a problem as he was fine when I said I'd got a supply of cyclogest from my nhs consultant. I think it all depends on your GP and hospital consultant.

@KtAgs I think the progesterone just prolongs the mc for me too so I'll bear that in mind about reducing the dose, although I had some spotting so doubled it in this last pg.

It's just a stressful journey, had another negative test so that worry is over and the next one starts...will AF arrive or has the procedure caused scarring?! I just get myself worked up 😑