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

@Everhopeful35 it’s completely anecdotal obviously but i had my first son on Mr A’s plan and am 27 weeks with a second that’s hopefully going ok. When I was having my son I met a group of ladies on this thread and we made a private Fb group and have stayed in touch. Other than me, 3 have had 2 babies on the plan, 5 had 1 baby, and 2 no success. Of the 2, 1 went on to IVF (I think with donor eggs) elsewhere and is due soon. So a very good success rate basically. But it clearly doesn’t work for anyone and no excuse for poor bedside manner when you’re forking out so much money!

Mr S, not Mr A obvs!

*@HoldingOn2Hope do you mind me asking about how you started the process to get your adoption info? Only I've just been in touch with them to register my interest to adopt and they've said I have to be 6 months post any fertility treatment before I can even do it... it just goes on an on!! I can see me still doing this sit in 3 years time at this rate! I just want to break something and scream!!!

Also @HoldingOn2Hope Hydroxy does some funny things to start with - I had pins and needles and also bad headaches, and a twitchy eye! get a good 2 weeks in to let your body adjust and then you'll find your body gets used to them.

Thanks all for your thoughts on crp clinic, or more notably Dr S himself, I'm thinking of making a complaint, either to them directly or to the GMC about the care received. I'm not sure it's right that particularly vulnerable and desperate people are dealt with in this way.

@Everhopeful35 I'd be very wary of taking anti-depressants with the other drugs, there are some really potent things in there and I'd be worried about the affect that might have on a) their effectiveness and b) yourself, for example the steroids have been know to have some mental health and strong hormonal ups and downs so definitely speak to him before you do this.

@Everhopeful35 He does have an amazing success rate, another reason why I decided to give it another shot. Have you considered counselling for the way you're feeling? Xx

@hrtbrk2 I've inboxed you xx

@HarrietM87 Thank you so much for your message. These kinds of stories give me hope when I'm having rough days (like today). Did the plan work for you first time? I'm already three miscarriages abc a chemical pregnancy down and just not sure how many more losses I can cope with? Also, in general, does he start most of his treatments in advance of getting pregnant? I'm doing IVF so keen to get on with another transfer and thinking about how long I might have to wait (I think everyone on this group can concur that waiting is the worst).

@HoldingOn2Hope Yes, I'm having counselling, but some days my mood is so low that I can't even seem to get going. I feel like I need a little extra help. But it's good to know that it might cause additional problems @hrtbrk2 - I'm going to call fhf clinic and see what they say.

Hi @Everhopeful35 yes he starts treatment from ovulation, which I know is necessary for me because I had an unplanned pregnancy which meant I didn’t start the treatment until
after bfp, and I lost that one.

I had 3 miscarriages before seeing him, then the plan worked with my son, then I had that unplanned one and 4th miscarriage, then the plan worked again this time. I also did superovulation both times (basically to get complete control over timing) and it worked on cycle 1 for my son and cycle 3 this time. I know I’ve been incredibly lucky.

I’ve seen a fair few people who have miscarried on the standard plan (pred) and then he usually adds hydroxy. Everyone in the group I mentioned above had success with either the pred or hydroxy (plus some had clexane/fragmin too).

@HarrietM87 Wow, that's so interesting that both times you followed his plan it worked and the one time you didn't you had a miscarriage. I must say that I've been a sceptic of immune treatment and even though I did it with my last pregnancy, I felt it was more of an insurance policy - a 'let's throw the book at it just in case' kind of thing. Now that I've had another miscarriage, I'm having to trust in it a bit more so your story helps me a lot. Thank you. x

Yeah he basically said “I told you so” with my 4th miscarriage. I think it’s different for everyone though. All my losses were pre-6 weeks/pre heartbeat (though a couple were missed so not discovered until later), so for me there’s obviously something that goes wrong really early on, and I guess why I need the treatment before bfp. I also have hashimotos disease and very high anti thyroid antibodies. I’ve often wondered if the NK cell thing is just rubbish and it’s the thyroid stuff that the pred really treats. Or maybe it’s all just down to the progesterone?! No idea. Tbh I don’t think the doctors really know - there’s so much trial and error and it monumentally sucks when you effectively have to use each pregnancy as a guinea pig with some random treatment and just hope it works.

Morning all, had a BFN Monday. I keep being naughty and testing early and there being a faint line at 7dpo and then nothing on 10dpo. It's happened each month. Perhaps its the progesterone making my uterus more fussy to dodgy sperm/egg? Starting to go into panic mode now which is so unhelpful. If I don't conceive next month, it'll be the longest its taken us.

Anyway, came off the pred and yesterday felt awful. Really down, the world is ending kind of gloom. I'm glad that is the last of my pred taking for a while. I just wanted to say I feel your pain @Everhopeful35. ADs are a really personal choice but bear in mind they are a 6 month minimum commitment (according to prescribing guidelines) and people are often on them for much longer than that. FWIW I really haven't felt as much myself since my loss in January but I'm trying not to be too hard on myself because its awful what's happening to us, and coupled with the pandemic, really hard going. Katy Xx

@KtAgs sorry to hear of your BFN ❤️ Sending love! I know the feeling all too well of panicking that I’m not falling pregnant now. Sorry if you’ve already said but are you on hydroxy now too? There was lots of messages way back about ladies finding it took longer to fall once hydroxy was added but Dr S dismissed it as a reason 🤷🏻‍♀️

This is my 14th cycle since my last miscarriage and fourth SO 🤞🏽 I’m just praying at my follicle scan tomorrow that it’s good news. Given it’s been over a year I would now qualify for a NHS infertility referral, although I’m not sure what they would do for me right now. Out of interest has everyone pursued the NHS and private route side by side? My appointment for the RM clinic took so long that when it finally came through I told them I didn’t need it anymore as Dr S had already ran all the tests on me. I’m just wondering now whether that was the right thing to do or if I should have gone down that route too 🙈 xx

Yes - I'm on the hydroxy. I kind of think it's connected to the pred tbh. I'm glad I'm moving onto intralipids from ovulation next month. But because i'm getting faint positives before 10dpo, I hope its the progesterone making things more selective in my uterus. When you throw so much medication at it, it's hard to know what is doing what.

Please keep us updated about the follicle scan tomorrow. I have my fingers crossed for you!

With the RM stuff, I had all my investigations after my first loss as it was a late loss at 20w on the NHS. I've also got my GP to put me on the WL for IVF just so I felt like I was doing something. I'm also going to start taking Ubiquinol this month I think. See if it helps so I feel I'm 'doing something'. If that makes sense? Does anyone have any views on ubiquinol?
xx

@KtAgs so sorry to hear about your bfn, it's a horrible feeling - are you on the SO programme currently? If so, the faint bfp at day 7 is the trigger shot still in your system and has worked it's way out at day 10 xx

@KtAgs sorry to hear it's a bfn 😐 I take ubiquinol and not sure if it's makes a difference but I feel like I'm doing something too. Another good friend announced her pregnancy lastnight so I've had a crappy night feeling sorry for myself. We are a group of 6 best friends and 2 were pregnant last year while I was going through my loss and it's another 2 this year 🙄 they are all on their 2nd/3rd pregnancies and I'm still holding hope for 1!

My consultant has my test results but they can't tell me them over the phone so he's writing to me and they have agreed to email them to Dr S. I was a bit pissed about the fact he gets them before I do. One of those days when I want to crawl back into bed!

@hrtbrk2 I hope you're doing okay xx

Hi @hrbrkt2, I'm not on SO - just TTC each month. How are you feeling? I hope you're doing as ok as you can be.

That's so annoying @holdingon2hope. My consultant has emailed me mine in the past (and it was a kick in the teeth getting the news that way) but I would find it hard knowing that someone out there knows. I have also called the lab directly on occasion. Bit sneaky but I had to know. It's my baby anyway! I'm sorry you got the news about your friend. It's horrible feeling that way and feeling guilty that you do (although its totally understandable). I feel like I'm on tenterhooks waiting for everyone else but me to be preggo. I get scared opening messages from people I haven't spoken too in a while. I really don't like feeling like this so I feel for you, I do. xxx

I'm soooo annoyed! Not had a return call from the clinic re my test results! Yet they were pressuring me into them having them first and not to consult with the nhs! At least pissing rtn my calls! 🙄🙄🙄

Have you tried emailing them? I find they never pick up the phone so I always email @HoldingOn2Hope.

*it is shit they haven't called you back though.

@KtAgs yep emailed them yday and today. I'm really annoyed! 🙄

Hi @ktags I have acupuncture and she advised me and husband to take CoQ10 (ubiquinol) daily. Been taking 2 a day for a few months. Again hard to know if made a difference as there are so many factors at play but I ended up conceiving in March after a month of taking, and 9 months of ttc, but obvs that resulted in a really early MC. Standard! It can't hurt I guess.

Hope you're all doing ok. @HoldingOn2Hope I'm in same situ as you - 3 best friends are pregnant, one just had her baby. It really is hard isn't it. I feel so left behind. I also have the same thought every time I get a message from any female friends - that they're going to announce. I've found myself avoiding them a bit (and have come off social media as it was wall to wall pregnancy and babies!). I often feel like I want to 'come out' on social media to raise awareness of the shit we have to go through in silence...! X

@KtAgs oh wow ok, that is strange, like you say hopefully that's just your body doing its thing and making sure what sticks is right

@HoldingOn2Hope I'm angry for you that you aren't being treated fairly - so frustrating. Hopefully you can catch up with them today - and on the friends front, I hear you. I think it's one of the worst parts of this journey - the constant reminder of the world around us still turning while ours seemingly stands still. stuck on Groundhog Day. It makes you feel so isolated - I don't have the answers but feel your pain.

Thanks for your thoughts girls - I'm ok. I've had a few days to really get my head around things and have a few healthy conversations with people - one of which is a friend with 2 adopted kids and now one miracle biological baby. I think I am truly ready to move on to the next process and I feel ok about that. It's also quite a nice feeling that I don't need to keep going down to Epsom, I don't need to pour more money into it, I can relax a bit on the diet etc (although not too much so as not to flare up the Endo) it'll be good just to get on with life while we wait 6 months to get the adoption ball rolling. Once upon a time I'd have been devastated to have to wait 6 months but now I think I'm so tired by it all that I'm just ready to accept what ever is meant for me will be and I dont need to fight it.

I'll keep an eye on you guys though and have everything crossed for you all xx

@hrtbrk2 A friend of mine adopted two siblings a couple of years ago. They are both such gorgeous little boys and both feel very loved and safe...shes made a huge difference to their lives and them to her :)

xxx

@Hazlet2 it's awful isn't it. They are my close friends too but I haven't really had much support from them so question our friendship. At the same time I think they just don't know what to say so they stay silent. That frustrates me too!

@hrtbrk2 I'm glad you've had an ok few days, all what you are feeling is exactly how I felt after my miscarriage. I think even during lockdown I was glad I didn't have to make trips to Epsom. I'm not sure why you would have to wait 6 months to start the application process maybe look into your local authority adoption services too. It's a wonderful thing to do and I honestly believe only ppl who are really blessed are able to do.
I've still not heard from the clinic 🙄 will call them again today. Pls keep checking in on here although I understand sometimes time away from this is much needed too. Virtual hugs 🤗 xx

@HoldingOn2Hope I’m sorry to hear that the clinic have been so shit in contacting you! I could’ve pestered them for you today whilst I was there 🤣 hopefully you’ve heard back from them now?

@hrtbrk2 glad to hear you’ve had some time to think about what I can only imagine is a very difficult decision ❤️ Any babies would be extremely lucky to be adopted by you xxx

@KtAgs thank you for your finger crossing - it seems to have worked! I have two follicles at 14mm and a lining of 6.2mm on CD7 so Dr S was very pleased 👏🏽 I’m set to trigger on CD10 so he’s hopeful my lining will be even better by then. Hoping our luck might be turning and we might actually fall pregnant soon 🤞🏽

I hope everyone else is doing okay? Xx

@Wishing5tar that's great news for you! Will keep everything crossed 🤞🏽

The clinic finally called me back just, no abnormalities and it was a boy. I just feel so sad.
I don't know where I go from here...Geri said Dr S will have a look at the report and she will let me know there's a change in my plan.