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

I hope everyone is ok. I really feel for you all with the COVID-19 anxiety around. I can usually be quite calm about this sort of thing but its ramped up massively. FWIW - just logged on to the CRP website and there was a link to this article that seemed helpful:
obgyn.onlinelibrary.wiley.com/doi/10.1002/uog.22006.

@Countrygirl220 welcome to the thread. I joined it recently and everyone has been so lovely. I hope your scan went well. I would agree with what's been said about it being early so fingers crossed you get some good news.

Had my first appointment with Dr S today. He basically said what I expected - that he really does not like treating women with late miscarriage and he would rather have 30 early ones than a late! What was interesting was he said you've been really unlucky with your chromosomal early miscarriages and I said I find it difficult to understand 1) they are not related and 2) that there is no reason. He said there probably was a reason but we did not understand it yet.

I have a follow up in three weeks. He did say he is advising women not to start taking any immunospressant medication and TTC until we know more about COVID. Like that would stop me - lol!

Good luck for your scan tomorrow @HarrietM87 and fingers crossed for everyone waiting for results, appointments or scans. Take care xxx

@HarrietM87 great that you’re feeling sick! (That sounds weird but it’s positive). I have no symptoms apart from a bit tired sometimes, i have my scan tomorrow so will just have to see.... good luck for Wednesday.

@KtAgs it’s not great timing; wait for months to fall pregnant again and now I feel quite vulnerable, and still weeks away from being able to stop the immune suppressing drugs, but hey it’s life I suppose. I’m not surprised dr S is advising that advice.
Im glad you managed to see him, and it’s good to have an experienced dr like him trying to get to the bottom of it if there is a link. Has he run a load of tests on you? I’m guessing you’ve been been tested for anti-phospholipid syndrome too? X

Hello all, thanks for your kind messages, it’s really lovely of you all. Unfortunately it’s not good news I went for the scan and there was nothing there, so he thinks early miscarriage or ectopic. Have to go back tomorrow to get my HCG measured. I’m beyond devastated but my doctor is lovely and said some kind words which helped a bit.

I’m sending hugely positive vibes for all your ladies scans over the next few days. I will keep my fingers crossed that it is good news for all of you.

Also I asked my doctor about Coronavirus as I’m still weaning off the pred and just thought I’d share. He said on the pred you are more likely to get it and probably with a bit more severity. He has said stay at home and don’t go to the office and my OH as well so he’s not picking it up (so much like the Govt has said today). Don’t want to scare anyone but thought it would be helpful to pass on the advice. Stay safe!

Hi everyone, sorry I've been so quiet, I fell into a hole of anxiety and just took myself offline for a bit.

I had to spend a whole day surrounded by coughing people at St Mary's last week only to be told there's nothing wrong with me, I just have bad luck and that pred is pointless. Thanks for that NHS!

I'm still pregnant as far as I know. I've got my scan on Wednesday and am absolutely terrified! I've never beyond 6+4 and I'm 6+1 now 😬

That coupled with pred insomnia and the corona stress is just too much to take!

I'm really glad you saw Dr S @KtAgs and I hope the tests give you some answers and a plan of action.

I'll be thinking of you tomorrow @Eeviee and you on Wednesday@HarrietM87.

I hope everyone else is staying safe and sane in this madness!!! Xx

It’s mental isn’t it...my work still isn’t recommending that people wfh even after the announcement this evening. I’ve told my team I have an underlying condition that means my immune system is suppressed so I can wfh for the foreseeable, but very conscious that this pregnancy might not even be viable, and now worries that my scan might be cancelled and/or be too early to be conclusive (I’ll be 6 weeks exactly on Wednesday) 🤦‍♀️. Thinking of you both @Eeviee and @FrannyAnny82 - we’re so close on dates!

@Countrygirl220 I’m so so sorry to hear this. It’s just monumentally shit. Hopefully not an ectopic and you can move past it quickly. I’d urge you to consider trying the plan from ovulation if that’s what mr S recommends, when you’re feeling up to it.

@KtAgs sounds like that was a tough appointment. I’ve found mr s to be very matter of fact and I think he wouldn’t give you false hope but he’s got a good success rate, even outside his specialism. He sees so many women and hopefully he’ll be able to do something. What happens in 3 weeks?

Hi @Countrygirl220 I am so sorry to hear of your losses, I've had 5 and my last was ectopic/PUL aswell which was terrifying at the time but actually turned out okay so try not to be too anxious. They just monitor your hcg every 48 hrs (mine was rising slowly but after passing some tissue it finally began to go down). They can give you medication to make everything happen quicker but I asked to go the natural route as I dont think you're allowed to get pregnant within 6 months of taking it? Anyway I just wanted to reach out as it really knocked the wind out of me and I know how shocked you must feel - it was an extra kick to the teeth on top of miscarrying, like I cant even grow the baby in the right place! Here if you ever need a chat!

How is everyone else getting on? So many pregnant ladies now and I am crossing my fingers for you all! I must say I'm feeling anxious about taking pred now during this pandemic, toying with just stopping it and seeing how things go, maybe I could take it when/if i get a bfp?? I just cant see me travelling up and down to london for all these appointments with the way things are going in the country! Im not sure if Dr S would just allow prescriptions to be sent out - does anybody know? Xx

That's so annoying about your work @HarrietM87. I think hospitals will still scan people but it will be a worry for the foreseeable.

Sorry St Mary's weren't helpful @FrannyAnny82. They really take a different approach. When I told my husband that Prof Regan thinks people like Mr S takes money from vulnerable women he said how much he like him and that if he gets results, then he thinks that will help people who are struggling.

So sorry to hear that @Countrygirl220. I wish things were different. It f*ing sucks. Take care of yourself and your partner.

@Eeviee had all the eye wateringly expensive tests done. Including the Comet. Have a follow-up appointment in 3 weeks. Maybe it'll be over Skype?

@luckyducky2 I know what you mean. Dr S said he would be unlikely to commence people on immunosuppressants until we know more about COVID-19. Could be worth checking how he will replenish prescriptions? Would he do appointments online?

Look after yourselves everyone. Xx

Hello ladies, I hope you are all well.

I just wanted to let you know about the option of a ‘fit note’ from your GP. I am 20 weeks and up to Friday my boss was unreasonable and was refusing to let anyone work from home ( by the way I work in an office and we can all work from home with no issue). I had a nervous breakdown on Friday at the hospital and they advise me to call my GP and request a fit note. This says that I am fit to work but I need to work from home.

My boss knows I am pregnant but for those that are TTC and those in the early stages you can ask to have ‘underling health conditions’ instead of pregnancy. Do discuss it with your GP. Mine was great and very helpful.
Funnily enough, yesterday we were all sent home eventually but I thought to share just on case you did not know this option (I did not).
All my love ❤️❤️❤️❤️

Just to say that I'm thinking of you all at this additionally anxious time. I've just been listening to something on the radio about pregnant women and people TTC and the virus.

Stay safe everyone and try to keep calm xx

Thinking of you too @KittyKatSmile. Which station was it on please? I may try and listen to it on catch up.

@KtAgs it was radio 4, Woman's hour. You can listen to the podcast or on BBC Sounds x

@Countrygirl220 I'm so sorry to hear your news, I'm glad to hear that you have a sympathetic doctor, sending you lots of love at this tough time.

@Luckyducky2 I'm in the same boat, I'm meant to be going to London for intralipids in 2 weeks. I'm not sure how that's going to work?

Thanks for thinking of me @FrannyAnny82 @HarrietM87 . I don't really know what to make of my scan today. She scanned me and could see a gestational sac but nothing else, no baby / heartbeat / fetal pole. She said I was measuring 7mm and estimated I was 5w+4 , she said it'd be normal not to see anything that early and it looked normal for that stage. But according to my app and based on first day of last period, I thought I was 6w+3 in which case I'd expect to see something. So I have to wait and go back in a week. I'm struggling to stay positive, I don't understand how dates could be so different and am worried it's just not growing and not viable.

@KittyKatSmile hope you are doing ok, whats y
our due date? x

Oh no @Eeviee I’m so sorry to hear it wasn’t straightforward. That’s my worry as well with my early scan - when it’s borderline you can’t tell whether there’s a problem or it’s just too early to tell. What day of your cycle do you think you ovulated on? The pregnancy dating is based on ovulation at day 14, so if you ovulated on day 15 you’d be a day behind the date based on LMP, day 21 you’d be a week behind etc. Plus it’s really hard to measure correctly at that stage.

It will be a horrible wait for you until next week, there’s no getting round it. Is your next one on Tuesday?

It's just horrible having to wait around not knowing, I'm not entirely sure when I ovulated, possibly slightly later than day 14 but wouldn't have beenmuch later it just concerns me that there's no yolk sac. You search on mumsnet and lots of people who see nothing at that stage and then it's all fine, but with my track record I do expect the worst. She wanted me to wait 2 weeks for another scan, I said I wanted them to check next week. Good luck for tomorrow xx

@Eeviee I’ve been there before with two missed miscarriages and have done so much googling and it’s really 50:50 - some people come back and all is fine and some come back and there’s no progress. It’s truly horrendous.

Also, I had bleeding in my pregnancy with my son and had a scan at 5+4 (based on LMP, but I had ovulated day 12 so was really more like 5+6) and the sonographer couldn’t see anything on the scan. I was in tears and she called a colleague in who tried again and found the heartbeat, so it can also just be the skill of the person doing the scan and the sensitivity of the equipment. Everything is so teeny tiny at this stage. Fingers crossed for you xx

@Eeviee Balls! I'm so sorry you've been left in limbo and had more anxiety heaped on you. Like @HarrietM87 says though, you might just have ovulated late? I'm technically 6+3 but ovulated day 17/18 so my dates will be all muddled up too. And clear blue gives an earlier prediction for me than an internet cheapie if that makes a difference? As if everything wasn't stressful enough!!!! Do you have access to an epu? You could wing yourself an extra scan with them in a few days time when something might be more visible?

Thanks @KittyKatSmile It's everyone's panic buying that makes things even more frightening. I decided to take a stand and not do it and now I have no toilet roll, no paracetamol, limited aspirin and no antibacterial products so that'll teach me!

Totally agree with your husband @KtAgs. An IVF doctor and St Mary's slagged off Dr S but my response was well what the hell are any of the rest of you doing to help? Bar Prof Quenby no-one cares about us miscarriers.

Sending lots of love to you all today and to you Eevie - there's still every chance this will turn out fine and dandy. xxxxxxxxxx

Hi @Eeviee, I'm sorry it wasn't a simpler outcome from your scan. I've been there and know that wait. I think do your best to hold onto hope because I think as @HarrietM87 said, it could well be a positive outcome but i totally understand that 'Well that does not happen to me!' attitude. I think you should give yourself credit for insisting on going back in a week as it gives you a focus. I will have everything bloomin' crossed for you!

And @FrannyAnny82 - I did a LOL when I read your message as I did that 'I'm not panic buying' approach too and now I have begun to run out of a lot of things. If you can't get hold of any asprin, I could post you some because it looks like I wont be able to TTC for a good few weeks, possibly months at this rate and I have a couple of boxes. And yes, I think at least Mr S is helping. I also instinctively know something is 'off' and he listened and agreed with me. He told us a personal story that related to female instinct and said he believed in it entirely and you can't read about that in books. My husband also liked his suit. So glad hubby's priorities were in order !

@Eeviee are you allowed to get intralipids elsewhere? I know they dont allow it normally but obviously this is extreme circumstances. Just thinking that they do intralipids at GCRM in Glasgow, its the only place I've seen in Scotland that does it? I hope everything with the next scan goes okay, I'll be thinking of you Xx

Hi everyone,

@Countrygirl220 I’m so so sorry to read your news.

And @Eeviee I’m thinking of you too and keeping absolutely everything crossed.

For anyone trying at the mo, just to reiterate what’s been said already on here. I realised I will have run out of medication by my next appt with Dr S as it falls in late April due to Easter. Just called up to ask for more and was told meds cannot be prescribed unless you’re at an appointment.

Nurse also said they are recommending that people don’t try to conceive for now as they don’t know enough about Coronavirus and the impact on those taking immune suppressing medication. She suggested I keep going this month (as I’m a day or two off ovulation anyway) and skip next month. She said if it turns out I’m pregnant this month it’s absolutely fine and not to worry. Don’t know what to make of it all to be honest.

Thinking of you all. Another thing to think about in our already difficult situations! X

@Crystal2020 so they won’t give you a prescription unless you come in person? Really hope that doesn’t apply to those who are already pregnant...if this works out for me I really don’t want to have to travel all the way to the clinic putting myself at risk on public transport etc just to get pred 😱

@Eeviee I'm so sorry to hear this. I was terrified of early scans for just this reason and refused to go at anything starting with a 6. I too have read absolutely everything on the internet about this. Sending you strength for the coming week.

And due date has now passed. I've got a lovely little girl, Nancy, born on 2 March. I didn't say on here as I know it can be hugely triggering but hopefully it can give someone hope xx

Hi @HarrietM87

I totally get where you’re coming from and I really hope it’s different for those who are pregnant. But for me, it was a definite no....

Nurse I spoke to was lovely so maybe give them a buzz to check?

I’m unsure what to do now given corona situation. Are others planning to keep on trying for now? X

Ah @KittyKatSmile that’s the best news ever. Has brought tears to my eyes. And what a beautiful name! Huge congratulations to you!!! X

Amazing @KittyKatSmile! Congratulations and enjoy every minute!