Immune/NK Issues - aka Pred Thread no 24!

[KittyKatSmile]

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 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.

@Chickjen @FrannyAnny82 @ginandtonicformeplease @HoldingOn2Hope @LockThatFridge @Luckyducky2 @MairMum18 @MrsMargot @weddinghelp1 @williteverhappen @Wishing5tar @zoe16
@Eeviee
@Ultra26

@KittyKatSmile congratulations on the safe arrival of little Nancy, what a cute name! It definitely gives me hope that through this whole sorry mess,there might be something beautiful waiting at the end!

@Crystal2020 thanks for that info, god this is such a nightmare isnt it, waited so long for an appointment and now we need to wait even longer! What can you do though, it's all out of our hands isnt it Xx

Welcome to the world little Nancy! Such happy news @KittyKatSmile ❤️ x

Congratulations to you @KittyKatSmile and little nancy. How wonderful. I need good news like that at the moment. xxx

@KittyKatSmile a girl! Just like you thought 🎀 Congratulations! I had been hoping for an update. Hope you are recovering well xx

@Lemurville as I read your post I was thinking that sounds like thyroid. Have you had the thyroid blood tests? Have they also tested for PCOS, I think that can make you bleed nearly constantly.

@Eeviee that's tough 😥 I do so hope it could just be too early for the sonographer to see, it will be a horrible week but well done on insisting one week rather than 2, that really would be hell 💐

That is interesting MrS is advising to wait, I assumed as our immune systems are too active, taking the pred just made them 'normal'. I'm not sure I could bear to wait with no end date in sight, but I guess really it would come down to personal circumstance and how well you can avoid going out. It's a tough decision and I really feel for you especially if you are forced into it by not being able to get the meds ❤️❤️

www.rcog.org.uk/en/news/professional-bodies-response-to-government-advice-for-pregnant-women-to-self-isolate/

This might be helpful although I appreciate we are on immunosuppressants as well x

Congratulations @KittyKatSmile on the arrival of baby Nancy. Fantastic news. Hope you are doing well?

@Eeviee I’m sorry that you are in limbo. It really is the worst situation to be in & I completely feel for you & how shit it is. I’ve been there & im sending you lots of post I’ve thoughts I really am xx

@HarrietM87 good luck for your scan tomorrow. Hope you’re ok. Let us know how it goes x

@FrannyAnny82 good luck tomorrow too xx

@Countrygirl220 I just wanted to say hi & say I’m sorry you’re having a totally shit time x

Hi to everyone else x

@KittyKatSmile Congratulations! I'd been hoping you'd update. And what a lovely name

I'm now 21 weeks - I had the anomaly scan last week and everything is looking good - I'd been worried that some of the medication I take would have affected the baby. I have to have extra scans so they can check he's growing ok, but I'm actually starting to feel a bit positive about it all. I never thought I'd say that.

Thanks so much for the offer @KtAgs, that's really kind! I'll see if I can get my mitts on any at the clinic tomorrow as wouldn't want to take yours just in case you decide to go rogue and try anyway! We tore the house apart and managed to find two packets of paracetamol and three toilet rolls 😂 The next 14 weeks are going to be interesting

Thank you @mezgaski. Don't think I'll be sleeping tonight 🤢 x

Congratulations @KittyKatSmile 💜

Just a quick update as I know a few of you ladies have mentioned appointments at the clinic and prescriptions etc. I was supposed to have my follow up appointment with Dr S in London tomorrow but the nurses rang today and asked if I’d like to change it to a telephone consultation instead. They mentioned they are advising against falling pregnant at this time but that it was my decision and they’d support us through it if we go ahead anyway. I asked about my prescription as I’m pretty much out of everything and she said Dr S would prescribe it tomorrow and get it to me. They’ve sent me a written script through the post before that I’ve then taken to my local pharmacy with living in the North East (although I think they use pharmacierge if you’re close to London) so I’m hoping he’ll just do that. We don’t plan on stopping ttc but just being extra careful and social distancing.

I told them I was mid way through a cycle and she said if we did fall pregnant this month then the clinic would still provide treatment as normal. We’d probably just make the horrible 6 hour drive each way rather than risk getting the train in and out of London.

Stay safe ladies & thank you for providing an amazing support network at this difficult time. I know I’ll be checking in regularly whilst working from home & trying to keep my anxiety in check xxxxxx

Just to add on the drug front that in the past I used one of the apps like Push Doctor to get prescriptions. They have prescribed me pred before when I've explained that I was already on it etc etc. I did that once when I didn't want to pay to see Dr S just to get more drugs. So worth it as a back up and you don't have to see anyone in person.

Much love and thank you all so much for the congratulations and well wishes. I couldn't have got here without this forum. It's a year ago this week that I was having my last D&C and the time that I found this thread and it saved me at a very dark time indeed.

Keep on keeping on ladies x

Thanks @Wishing5tar that’s really reassuring. I’ve held off contacting the clinic because I have a scan at the EPU this afternoon so wanted to see what the outcome of that was. Intralipids are the real problem...I wonder if you can get them elsewhere in London? I live in East London and don’t drive so it takes over 2 hrs to get to Epsom via bus, tube and train...really not keen on doing that at the moment! Will have to see how it goes.

@KittyKatSmile I haven’t heard of Push doctor - thanks for the tip!

Congratulations @KittyKatSmile wonderful news and what a beautiful name. Enjoy your new bundle of joy.

I'm in the 2ww wait and for once I'm not stressed or anxious as I think a bfp would only make me worry and increase my anxiety right now!

Hope all you ladies are doing okay and staying safe x

Hi everyone, Thanks for all your kind words, I went to have my HCG blood test and now I'm just waiting for the results... so a little bit on tenterhooks because of that. I think I am going to take the pred from ovulation next time, if everything is ok with the HCG as I think we're going to have to self-isolate anyway. We've also booked an appointment with a fertility consultant tomorrow just to talk about IVF and PGS testing, although that is an unbelievably expensive way to miscarry, I just don't want to run out of time and then think I should have investigated it. But we'll see...

@Eeviee I'm really keeping everything crossed for you and sending positive thoughts. I have literally found the week between scans unbearable, almost worse than the news itself, so hope your managing to keep busy.

@HarrietM87 I'm keeping my fingers crossed for you too, let us know how you get on this afternoon.

@KittyKatSmile congratulations on the birth of your little girl, I personally think good news stories like that are great, it gives us all hope it'll work out one day. Enjoy her!

And good luck @FrannyAnny82 too, ooh wow so many scans!! Lots of positive thoughts coming your way!

Thanks so much for the well wishes. Had my scan just now and saw a baby measuring 6 weeks exactly with a heartbeat. Almost can’t believe it. Am sure the joy will last for about a day until I start stressing out again but going to enjoy it for now!

I'm delighted for you @HarrietM87. Great news.

@KittyKatSmile even you adding that this week is sadly the anniversary of your D&C gives me hope as someone who had theirs recently. It helps me imagine something different so thank you for sharing. Baby news is just so lovely.

@Wishing5tar so reassuring! Thank you for your post. I am unlikely to take the clinic advice and not TTC so what you said made a lot of sense.

@FrannyAnny82 I don't have an appointment for another 2.5 weeks and if I do commence anything, Mr S reckons it will be Hydroxy, which takes 6 weeks to get into your system so I think it'll be a while for me yet anyway. So please let me know if you need that asprin. X

Thanks @Countrygirl220 The scan showed I'm 5+6 and there was a heartbeat for the first time ever. I cried my eyes out, two weeks of stress just came tumbling out. My losses have been around this point so I'm still nervous but I must remember to let myself enjoy the positive moments.

We were looking at PGS testing too. That'll definitely our next path because I don't have the strength to just keep rolling the dice and the clock is ticking.

That would be amazing then please @KtAgs. Thank you so, so much. You ladies are THE BEST.

Good luck @HoldingOn2Hope and to everyone else in the 2ww/waiting for results/waiting for scans. We are the bloody masters of waiting X

@HarrietM87 You can get intralipids at the Independent Nursing Service, near Harley Street. They just need a prescription. Last time I used them it was £175. I know they also do home visits for some things, not sure if they do it for intralipids.

@chickjen yes t4 has been low a few times, then the repeat test comes back as within range (still on the low side though). But tsh is normal. Go had referred me to gynae but round here they seem a bit rubbish tbh and since latest blood tests she wants to send me to endocrine consultant as it's not obvious what it is.

Does anyone know how long it takes to receive a consultant appointment letter following gp referral? I've been waiting nearly three weeks now. Congratulations @kittykatsmile lovely news, x

@HarrietM87 and @FrannyAnny82 , so glad to hear that your scans both went well, how absolutely amazing to see a heartbeat, hope this allows you a bit of happiness in these crazy anxious times.
Thanks @KtAgs @mezgaski now its just a waiting game, I'm up and down trying to stay positive but also not trying to get my hopes up to much.
@KittyKatSmile what wonderful news, so happy for you. Hope you are enjoying every minute with Nancy. xx

@Luckyducky2 I spoke to GCRM as well and they will do intralipids fro £375 but I'm not sure Dr S would allow intralipids anywhere other than his clinic if you're under his care. If next week's scan goes well, we'll have to drive from Aberdeen to London for me to get the intralipds - only 1000 odd mile return trip!!! But i don't care, if I have a positive scan then it'd be worth it.

@Chickjen hope you are keeping well
@Countrygirl220 hope you get your results too and I definitely think pred from ovulation is worth try xx

@Eeviee I’m so sorry you’re still in limbo and hope you can get through these next few days. Would be insane if you had to drive down for intralipids - is that really your only option?

@FrannyAnny82 so pleased that your scan went well. If you’re 5+6 your EDD is 12 Nov? Mine is 11th.

As expected my happiness from yesterday has faded a bit. Told some friends because wanted to explain the self isolation and they were like oh poor you having to tell earlier than you should, hope it all works out etc...kind of like they were expecting it might go wrong? Which obviously I am but they don’t know my history so I wasn’t expecting that reaction. Think we might tell my in laws today for same reason. My mum already knows.

Thanks @Eeviee, hope you are doing okay and manage to get something sorted with the intralipids, that is a long drive!! But like you say, it'll be so worth it for happy news.

I'm not sure @HarrietM87 I didn't dare ask. I've not even dared look at the picture we got which I know sounds crazy. I'm terrified. What a ray of sunshine I am!

Sorry you're feeling crap, people just don't get it sometimes. But the odds are in your favour - even with our history. We've had to tell a lot of people due to isolating - work, family, friends etc. Sadly loads of my friends have had fertility problems too so they know the drill.

Hope everyone is doing well. I've just given into my ferocious pred hunger and nailed half a bag of Doritos. They were delicious X