Immune/NK cells - pred thread 28

[myrainbowjourney]

Hi Ladies

New thread 🥰

If you comment to hold your place. I'll try and tag as many as I can xxx

@MissPMA I'm so sorry to hear that your levels look like they're dropping and that this is your sixth loss. I was also quite concerned not to be on pred but a few of the other ladies on here reassured me that they had successful pregnancies on hydroxy. But definitely ask Dr. S and see what he thinks. Have you been under anyone else's care before this? I think he definitely knows what he's doing, he has a great success rate so I keep telling myself to just trust him. Not sure if that helps you or not but it helped me when I was worrying about hydroxy vs pred. X

Thanks @Lozfish. No I’ve not been under anyone else’s care. I know you’re right, Mr S has a fantastic track record and if he says I don’t need pred then I should trust that. I think it’s because I felt so overwhelmed in my results appointment that I didn’t ask the question and have been worrying since then that it wouldn’t be enough! I’ll make sure I ask this time 😊 To be honest I don’t even want to take pred as am worried about the side effects but just need to feel sure that we’re doing everything we can to get this right

@MissPMA hello, sorry just a quick message but I wanted to say, I had a chemical and straight after I said to Mr S that I really wanted to add pred to my plan and he did this with no issue. I feel that this made the difference for me. Good luck and take care, it can be so hard to keep a level head when you are trying to navigate your way through this xxxx

Hi all, as predicted I've started worrying quite a bit today as my symptoms have lessened a bit. Not a wild amount but I felt so sick yesterday and not so much today. I know from my other pregnancies that symptoms come and go, but those pregnancies didn't work out so I am struggling to calm myself. If anyone who has been through it and come out the other side can give me any words of wisdom for these next few weeks, I'd be so grateful x

@Lozfish not come out the otherside, but I do know that it's incredibly common, and very much expected, for your symptoms to ebb and flow. I know it's definitely easier said than done, but just try and to be as calm as you can 😊

Thank you @SunDance21 😘😘 Wish I could just go to sleep for the next 8 weeks!

@Lozfish: I'm crossing my fingers for you. Every pregnancy is different. Try not to worry too much. 🤞🏼

I have now seen Dr. Tozer and she was absolutely great! She prescribed Pred, recommended a few supplements and suggested to try again.

I hope everyone else is staying strong and positive. ❤️

Hey ladies 🌺 💛

So sorry to hear that some of you are struggling.

Just been hiding away for a while to try to recover from our 7th loss, the most recent under Dr S. The EPC did another scan and confirmed that there was now no tissue remaining, after nearly 4 weeks post MVA and stated that it was 'miscarriage complete' and sent me on my way. Whilst I guess that brings some finality to it, I just feel like I've lost it all over again. Just feel empty. Both physically and emotionally. When we had the MVA, I signed a form saying that we wanted the hospital to sensitively 'dispose' (I hate that bloody word) of our fetus post testing. I suddenly had a thought the other day that I wanted it to come home. Obviously not in the way I imagined, but I just had a sudden panic that I'd made the wrong decision. I contacted CRP & they told me that the lab didn't have it anymore. I was absolutely distraught. They then contacted me yesterday and said, "oh, we got it wrong, the lab does have it". How the f*ck can they just casually say that like they've lost my coat or something???!! Anyway, my question was whether anyone had any ideas surrounding a service we could have for our little one? I have no idea of what (if anything) a funeral directors could do. And I dont feel strong enough to do something myself.

I'm sorry if this is triggering for anyone & sorry for my waffling, just wanted to get it out I guess and share with people that just 'get it'.

We have our review with Dr S on 27th to understand the results of the testing, and I'm terrified. Just don't know what is next for us 😔 xxx

Hey @Tumby. I'm so sorry for what you've been going through. When I had my last miscarriage, the hospital actually offered us an opportunity to take part in a service that the offer for parents of Angel babies. We opted out because I didn't feel it was going to be right for me, but I wonder whether if you contact your EPU they might have something similar?

I hope your appointment goes well with Dr. S and that he will be able to give you some hope about next steps. I think I remember you saying you had another embryo left? I hope he can help bring that one to full term for you (so sorry if I have that wrong).

Sending lots of love xxx

Thanks @Lozfish and congratulations on your BFP. I'm keeping everything I possibly can crossed for you.

Thank you for the info, but I guess as it was the CRP that I had the procedure at, the EPC may not let me. I know that I want it to come home but just not too sure how I'll feel when it does.

Thank you ❤️ hopefully we'll get some answers. We've been trying naturally as don't seem to have a problem conceiving, it's just the holding on. When is your first scan? So easy to say don't worry but just trust in the process as best you can.

Xxx

@Tumby sorry I think I must have got your journey a bit confused! Ignore my comment about embryos. I wonder whether the hospital would still let you be part of the service? You could actually see if there's anything the miscarriage association do, or Tommy's.

First scan is in just under two weeks. I'm trying to just tell myself to be strong and that I can get through it. It's so hard just not to constantly over analyse every single symptom or lack there of. I guess we're all still going to have the same amount of risk for chromosomal abnormality, so I have to tell myself that being on all this medication cannot protect me against that, and that hopefully we'll get there one day even if it's not this one. I've signed up to a course called pregnancy after loss which is being run by The Worst Girl Gang Ever. It's £99 and im hoping it can help me get through these weeks ahead x

X

Finally stopped bleeding and had a negative test! really didn’t think it was going to happen. Actually think this last week of bleeding may have been a period.

Have also talked to GP and found out my TSH had gone down to 2.8 in week 11 (from 3.7 before starting steroids prior to pregnancy) so I’m now thinking it’s unlikely my thyroid antibodies could have gone up again since coming off the steroids in week 8 if my TSH was still much lower than it was. Now feeling like that coming off the steroids probably wasn’t a factor in the mmc so mentally am doing a lot better.

Still struggling a bit with anxiety and the feeling we may never get pregnant again. Did anyone who has done IVF find it easier to conceive after miscarriage? Or should we just go back to IVF sooner rather than later?

@Lozfish so pleased you have your BFP! But we all know the roller coaster that comes with it. Can you get an HCG blood test to check your levels are rising enough before you're able to have a scan? This really helped me to bridge the gap between BFP and when I could have my first scan at a time where there should definitely be a heartbeat (I didn't want to have it too early and have extra uncertainty). My GP did the blood tests for me. After my first scan I booked a private one every week or two until I could feel movement, which was quite late because I had an anterior placenta.

The first weeks go incredibly slow but it does speed up! X

@Lozfish I've seen that course on Instagram. It looks really good, I wish it had started when I was pregnant as I def would have done it

@Tumby my partner buried part of our last pregnancy loss in a pot in the garden with a white rose plant.

I also have a cercis tree that I am planning to plant in prime location as a little memory of my losses.

Hi all I was on one of the old threads. After 3 miscarriages, I was treated by Mr S for high NK Cells in pregnancy as well as high TNF Alpha.

I've just given birth to a gorgeous baby girl, so wanted to share some hope. I know it helped Me to hear of positive stories when going through such awful times.

Best of luck to everyone on this thread. Xx

Thanks for the hope @Whyisthistakingsolong ☺️ Congratulations!!!

@Daffodil21 thanks for your suggestion, so kind of you to respond. In the last pregnancy I got the GP to do the blood tests but I actually feel in hindsight that it increased my anxiety going in, and then waiting for the call which I had to chase. I actually did some yoga for anxiety the other day and it totally lifted me out of my spiral, and I tried some mindful running using headspace yesterday and it was also really good. Just for anyone who is in a similar state of constant worry, I was constantly being told to try yoga and never did, but it has helped me a lot. My therapist has told me my checking behaviours (Googling, checking for blood in middle of the night etc...) are feeding my anxious brain so I'm desperately trying not to do it and it is kind of working. Am trying to accept the coming and going of symptoms. Why do the weeks take so long!!!!!

X

@Lozfish yes, waiting for that call was horrific. My friend announced the birth of her baby in the moments I was waiting for the call. You couldn't make it up. I promise the weeks do go quicker. Hang on in there 

Brilliant news @Whyisthistakingsolong ! Huge congratulations x

I think it's probably time for me to leave this thread. I feel like I'm hanging around like a bad smell a bit!

Thank you all so so much for all of your support and information. I honestly don't think I would have my baby if it wasn't for the medication, and I wouldn't have understood it all if it wasn't for this thread.

Wishing all of you the absolute best. It's such a horrible thing to have to keep going through. You're all amazing women and much stronger than you probably feel ❤️

Hi ladies. How are you all?

Assuming everything is ok (I hope so because I can hear a heartbeat with a Doppler) I have my discharge appt from CRP this week. As I understand it I will be told to stop the meds after that. I am absolutely petrified I will lose the baby when I come off them. I can't find much online about stopping them or what happens, or why it's safe to stop them at 16 weeks. Has anyone read anything? I am so happy we have got to this stage but I'm so worried about it going wrong now.

Hey guys, how is everyone?

@Daffodil21 (if you're still on the thread) that brought a little tear to my eye!! So happy for you & hope you're enjoying your little bundle 💕💕 thanks for the hope & support xx

@Lozfish don't worry about getting mixed up; how're you feeling now? A little less anxious I hope. When does the course start?

@treesall huge congrats on getting to the graduation from CRP! I don't have a specific answer to your question but we had our consultation with Dr S today & grilled him within an inch of his life about hydroxy/intralipids/why they do what they do/success rates etc & he was talking about all the successes over the last 18 months with women largely just taking hydroxy. Again, I know it doesn't specifically offer reassurance about coming off them but I have so much more faith in him/the process now & don't be worried about expressing your concerns to him/the nurses. But all I would say is that that's their protocol & for a reason I guess ☺️

We had our consultation with Dr S today to talk through the results of the testing. It had trisomy 21 (so downs syndrome effectively) & he is sure that is what caused the miscarriage & said he wouldn't need to change the treatment plan (if we opt to try again). It's such a lot to process & don't really understand why it causes miscarriage sometimes but not others. Has anyone else had a similar experience?

Xxx

@Tumby still reading! I was such a mess after posting my last message. Glad you've got answers but it must be tough to hear ❤️

@daffodil21 I also wanted to say thank you for giving us all hope. Stories like yours are so important.
Definitely not a bad smell hanging in the the air. 💕

I second @Annabell1, it's really nice to hear your success story, it gives us hope. It's also nice to have advice from someone who has gone through the entire process.

@Tumby I am ok thanks, I am feeling quite weirdly calm this time. It's sort of like my body is telling me to chill. I have my scan in a week so I will be incredibly anxious before that I think. I am glad you got the results of your testing back, I think it's good that you have been given a reason, but it's still very hard to accept that you've had bad luck again. I am glad you're feeling confident in Dr. S treatment plan, your message has made me feel a lot more confident actually, even if this one goes south, so thank you. Do you think you'll try again?

Lots of love to everyone x

Hi ladies,

I hope you are all well.

Does anyone have any insight into how small doses of pred actually affects your immune system? I’ve just gone on 20mg daily and wondering how careful I need to be regarding COVID etc.

Thanks so much 🤍