Immune/ NK cells - Pred threat 27

[LaurenAB94]

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@tinkerbell999 I went for NKC testing at Coventry. It was £500 and included a consult and two biopsies but in a way getting tested didn’t put my mind at ease as the first biopsy came back high but on the low end of high and the second came back normal but on the low end of normal. So I started take pred on the back of the first one but the consultant I have told me to taper pred down now as I conceived when I had low nkc. So now I’m left wondering if I should still in fact be taking it or if it’s better to not take it at all. If covid wasn’t around I would take it blind I guess in the hope it may work.

I am sorry for so many miscarriages. I had 5 in a row so understand a little of your heartache... good luck with whatever u decide...

Hiya could you tell me where you got your testing done please was it a clinic ? I’ve had one after the other in the last 13/14 months pretty much every month I catch it’s just doesn’t stick 😭 I feel such a failure for it I just feel like I need to try something as I’m not getting any younger and worry I will run out of time .. that must be confusing for you not knowing what to do for the best with re to your pregnancy how far along are you ? X

Ah I’ve now found how to get on to personal messages Thankyou

@tinkerbell999 I've sent you a message

@tinkerbell999 where do you live? Dr S works (or did work) 1 day a week at Epsom hospital. I had the first appointment with him privately and he said he’d be glad to accept me for treatment on the nhs. The problem was my age (I was 41 at the time and he did have a long wait list) . I was in Sussex so I think he will treat from out of area . Could you phone his team at Epsom hospital (not his private clinic) and see what the process would be?

@tinkerbell999 the testing is done at Coventry hospital through Tommy’s. Look at this link:
warwick.ac.uk/fac/sci/med/research/biomedical/tem/bru/

You are meant to go for two biopsies but you get results back from each as they come through.

You aren’t a failure. I am 42 and I think this year I have realised that there is nothing I can do to make this stick and no one really knows why they stick and why they don’t. Not even the doctors. Most things appear to be done based on hunches and mostly luck. I am nearly 8 weeks but am really worried every day and night and considering getting another scan before my 9 weeks. Good luck.

Agh my first month on Dr S protocol and my previously very regular cycles seem to be gone weird. Has anyone found this with metformin or other PCOS medication? I know they’re meant to regulate cycles but if you’re already regular can they have the opposite effect?

@Tinpo I had irregular cycles to start with but the only difference I got was that it made me ovulate earlier say 16 rather than 21. You could always email the nurses or ask Dr S next time
You see him.

Hi all hope everyone well. I had an NHS early scan yesterday and saw HB again and measuring 7w2d which is bang on. A relief.

I'm at final stages of interviews for 2 roles which I really like, much more £ etc, however hadn't expected to be actually pregnant has anyone ever moved jobs while pregnant. I'm on a 3 month notice period so if this pregnancy continues 🤞I'd be about 20 weeks when starting.. Not ideal! I'm so miserable in my current job though! Anyone else been in this situation and made a move? X

Thanks @LaurenAB94 - I’ve been tracking all this cycle and nothing yet so hoping I haven’t missed ovulation!

@Whyisthistakingsolong great news about your scan! I haven’t been in your exact position but I would say go for the new job. If your job is making you miserable then you’ll feel so much better if you get out of it. The only problem might be not being entitled to full maternity pay, but you could always start saving/budgeting to cover that. I left a secure job that was making me unhappy to go self employed at the start of my baby loss journey. Sometimes I think if I’d known there was more losses and a global pandemic coming I would have stayed put, but I think I’d actually just be extra miserable.

Thanks @Tinpo, it just seems a mad thing to do but would actually be great for my career as both jobs are more senior, the one I really want is with Amazon!

Sorry no insights re So, but my cycles did change after my last mc to be shorter. Are you using Clearblue ovulation sticks? I find them the most reliable. I also suddenly went to static smiley after the last mc, whereas previously I used to have up to 5 days of flashing before the static. Cycles and hormones change all the time, so try not to worry yet! X

Sorry @tinpo just re read you're not doing SO. And yes, my cycles changed after the mc (and I went on hydroxy) as I mention above, however were still regular overall x

Thanks @Whyisthistakingsolong - definitely go for the jobs! Sounds exciting. I know there’ll be the underlying feeling of feeling guilty for starting a new job heavily pregnant, but I think we all need to do what’s best for ourselves sometimes and not let pregnancies control other aspects of life. Everything else will work itself out.

My last loss was June and I’ve been regular since then - for two days either 18/19/20 I get really bad ovulation pains, it’s undeniable - it feels like there’s a balloon in my ovary! Then period about 2 weeks later. This time I’m on day 19, ovulation sticks (cheap ones) are still completely blank. No progression at all. Then yesterday I had light cramps and some bleeding that’s stopped now. I do use clear blue ovulation sticks too but I think they’re the cheaper ones - I don’t get flashing smilies just nothing or solid smile. But they’ve always worked well for me in the past and I’ve never had trouble getting pregnant. Just trouble keeping them past 20 weeks.

@Whyisthistakingsolong that’s great about the jobs. Totally agree with the other ladies - you should go for it!

I had my results appointment with Mr S on Monday. My NK cell activation is high at 1.22 so I’ll be taking hydroxychloroquine from pre-conception until 16 weeks, and cyclogest from ovulation. Then intralipids from 4 weeks until 16 weeks.

Initially I was feeling so relieved to finally have the plan but I told my mum about it and she’s freaking out about the drugs I’ll be taking. She went straight to Dr Google and read the most severe side effects of hydroxy which she’s convinced herself I’ll get! She also keeps saying that I should just try surrogacy which really upsets me. I want to believe that the treatment will work for me but I feel so alone in it all. It’s so hard having to justify to her why I want to take the treatment and not just keep trying without Mr S’s help or go down the surrogacy route... I’m also so reluctant to even go to my GP to discuss the plan or starting to TTC again because he seems to think miscarriages just happen for no reason 🤷‍♀️ and gives me the bad luck spiel...

Sorry for the rant ladies. It’s just so hard going through this and nobody really gets it unless they’ve been there. Hope you are all well x

Hi @NessyT91, great you have your results and I too felt relieved when I had a reason and a plan. You're not ranting at all - it's really overwhelming when you have everything back.

I totally understand your mum's worry. It's only natural. But I love being on hydroxy. Once I started taking it, I feel some of my mild auto immune symptoms subsided - eczema on head, IBS and itchy face. This might be all in my head but personally, compared to the steroids, hydroxy has really agreed with me (the steroids did not!) I don't want to come off hydroxy when my pregnancy is over (although I'll have to).

I saw a rheumatologist after my results from Dr S as I showed some signs of lupus (no diagnosis in the end). They told me hydroxychloroquine is a standard treatment for people with lupus and its really safe to take in pregnancy. So I hope that helps.

Your GP might be critical of your choice to go private etc but a good GP should be curious about possible developments in research and practice AND supportive of a consultants care plan. Mine offered to prescribe me meds in rhe end (my NHS consultant was already).

I was also told there was nothing 'wrong' after a 20w, 12w and 10w loss but in my gut I knew there was something wrong. I'm currently 24.5 weeks pregnant with a little boy. I reckon you should trust your instinct too. ♥️

Katy x

@NessyT91
My plan was exactly the same as yours and I know we’re all different but other then few headaches at the start and maybe a week of feeling bit itching that is all the side effects I had.

I haven’t seen a GP or used the NHS at all during my time with Dr S as I knew I wouldn’t get the same support and would be a lot of questions about his treatment.
I had acupuncture along side his treatment at a local clinic to me which I think really helped me mentally.

I’m now 23wks actually off for a scan today actually (bit late) but we’re expecting a little girl end of May.
You’ve always got all of us for support and the nurses at the clinic if you have and questions I know they can take a little while to reply sometimes but I found them to be very supportive during the whole process.

Xxx

Thanks so much @LRL12 and @KtAgs. It’s so great to hear that it’s working for you both - gives me hope!
I discussed the whole mum situation with my husband last night and we’ve both decided to just keep things to ourselves about the treatment for now. I know it’s well intentioned but I find it really stressful to have to justify the treatment to people who have no idea what recurrent loss is like.
Thank you both again for your kind words and wishing you all the best with your pregnancies ❤️

@NessyT91 we have done like you. I have told no one whilst I was on prednisolone especially as my dad is in the medical field and I’m worried he will think all the bad things of side effects etc. It’s sometimes best to make your own decisions and if u want other opinions ask. It’s just when I ask I always feel a little compelled to do what they ask of me so have decided to not ask! Best of luck:-)

@Unicorn9 yes I feel now that it’s the best approach! Even if the advice is coming from a good place it can just become a bit like too many cooks in the kitchen.😂

I think people just don’t understand what your going through & unfortunately their concerns can come across quite negative when all you need is them to be positive, having to justify your decision just adds stress and doubt which is not what you need when TTC.
Good luck with your treatment hopefully you’ll have your own little miracle soon xxx

I went for an 8 wk scan and there is no heartbeat again.... 6th time notw

@Unicorn9 I am so sorry to hear this. Thinking of you ❤️

@Unicorn9 oh my gosh. I am so very sorry xxx

I’m so so sorry @Unicorn9. Seeing your news just made my heart sink 💔 it’s just so unfair.

I am really sorry to heart that. Sending you love @Unicorn9 💜💜💜