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Miscarriage/pregnancy loss

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Immune/NK Issues - aka Pred Thread no 25!

999 replies

Eeviee · 19/05/2020 19:57

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

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KtAgs · 21/05/2020 13:42

Perhaps you'll get better with practice @HoldingOn2Hope but fainting at the sight of bld (starred to not be too triggering) is an evolutionary thing that some people have to protect them e.g. if they're bing they faint to lower their bl*d pressure to keep them alive. Amazing if you think about it really. I've got a few exercises that help you raise your bl*d pressure in advance of procedures that I could send to you if you want? But your body really is just doing an extra good job of keeping you alive 😉. Well done you 👏🏼

KtAgs · 21/05/2020 13:42

and congratulations @mezgaski. Lovely to hear how you're doing ❤

HoldingOn2Hope · 21/05/2020 14:01

@KtAgs That is amazing! Any info would be useful so I can stop causing a drama for the nurses!

My covid antibody test came back negative so I guess I have to be extra careful while on pred!

I've sat in the midday sun today to absorb as much Vit D as possible :)

hrtbrk2 · 22/05/2020 10:41

@eeviee thanks for setting up the new thread! Wow it's been busy!

@Holdingon2hope glad your intrallipids went well - and @ultra26 Glad all is going well for you both!

@pepperthecat really interesting what you said about the opk tests. I had a solid smiley last night from nothing the same morning, no flashing and this has been the same for a few months - I'm slightly concerned I'm not building up a thick enough lining either. To add to that I have had no EW cm this month, in fact everything on that front is very scant so guessing this month will be a bust. Think I'm going to start SO next month. DR S is sending me a letrozol prescription for next months cycle, so you've got me thinking as at least this way they can check my lining which I wouldn't normally have.

Keeping up to date with you all ladies (although it takes me a while haha) and wishing you all lovely bank holiday weekends xx

HoldingOn2Hope · 22/05/2020 12:54

@hrtbrk2 I have some letrezole boxes, it didn't work for me so I've got a couple of months supply if you want them I don't mind posting them out to you xx

HoldingOn2Hope · 22/05/2020 13:46

Hello ladies,

Last 2 days I've had cramps in my left leg and a bit of groin pain. Can this be normal? Xx

Ultra26 · 22/05/2020 14:08

@HoldingOn2Hope I hope so because I've had the same! Such a stressful time 😩

HoldingOn2Hope · 22/05/2020 14:50

@Ultra26 tell me about it! I'm getting a weird tingling sensation in my lower back too.
How many dpo are you? Are we about the same?

Ultra26 · 22/05/2020 14:58

I've not had any back pain but the cramps did wake me up last night. I've decided to take it totally easy today though. We can't be too far apart, I think I'm about 19 or 20 dpo.

HoldingOn2Hope · 22/05/2020 15:02

@Ultra26 I woke up with a leg cramp yday it wasn't bad but was there and same again today. I'm 16dpo today. I'm taking it easy too, tbh I have done most the week apart from cooking and baking. The fish oil tablets in the pregnacare care box leave a weird taste in my mouth, can't remember this happening before.

HoldingOn2Hope · 23/05/2020 11:58

Morning ladies,

Those of you who are on pred are on reduced dose? I'm on 15mg but think I should have taken at least 20mg. Is it too late to up it? My losses of always been around 7-8 weeks so I'm just thinking so I up it now?

Still no symptoms, just a little tired than usual, crampy legs on/off and the prenatal vits make me heave as I take them.

@Ultra26 how are your leg cramps? I read that banana's are good to eat for leg cramps xx

Ultra26 · 23/05/2020 13:57

@HoldingOn2Hope Morning,

Thank you, cramps have subsided and feeling a little more positive today. How are you feeling?
What pred dose were you meant to be on? I am meant to be on 25mg but took 15mg during the 2ww and then upped it to 20mg with BFP. I did speak to the nurses and they were happy with that. Like you I'm hoping 20mg is enough but guess time will tell. Personally I don't think it's too late to increase it but you should probably ask the nurses.

Ultra26 · 23/05/2020 14:01

Also forgot to mention that I've got no symptoms either apart from on and off cramping. A few days ago I thought my breasts were starting to hurt but that didn't last. I'm hoping that because I didn't really have any breast tenderness from the start that the lack of it isn't a bad thing. I need to book in for the scan and intralipids and decided to do them both at 7 weeks hopefully, they allow me to merge meetings. When are you planning on going @HoldingOn2Hope ?

HoldingOn2Hope · 23/05/2020 14:25

@Ultra26 I've upped it to 20mg today. Hopefully it's ok. Like you it was 15mg from ovulation but just had a thought lastnight that I'd rather be on 20mg as my losses were at about 7-8 weeks.

Well the other thing is, my 6 week scan is booked at about 7 weeks as that was the only morning appt available (afternoon appts don't work for us as DH has to take the whole day off work) in Epsom and then 8 week intralipids with all being well the week after. I'm going to call clinic and ask if I can just stick to the 8 week scan/intralipids.
A 6 week scan won't really give me any reassurance as I've seen heartbeats at 6 and then nothing at 8. I'll still be fretting. Plus it saves us time and some money too. Xx

HoldingOn2Hope · 23/05/2020 14:26

@Ultra26 did you have the intralipids at 4 weeks too? My breasts just hurt done the side especially first thing in the morning and are tender when pressed but not really sore like they were in the 2ww. I'm still have a bit of cramping in my left groin.
I feel these next few weeks will just drag...

Ultra26 · 23/05/2020 14:48

@HoldingOn2Hope yes I went last Monday for intralipids. I also think you've done the right thing by increasing your dose. God willing it works for both of us. I actually think scans and intralipids should always be booked on the same day just because so many of us have to travel and take time off work but pushing to 8 weeks sounds like a good plan. I've never seen a heartbeat and never make it past 5 weeks so I'm just focusing on the next week. I start a new job next Monday and no idea how to juggle everything. At the moment I'm choosing not to think about it and hoping everything will fall into place.

HoldingOn2Hope · 23/05/2020 16:20

@Ultra26 Ah yes you did! I really hope it's works out for us both will keep fingers crossed and prayers too!
If the 6 weeks scan is just reassurance then I'm definitely going to wait til 8 weeks as it's booked at 7 weeks any. And I can face going to my local EPU it's gives me the creeps, so so many bad memories there I'd rather drive 3.5 hours to Epsom!
I'm trying to focus on my diet for the next couple of weeks, lots more fruit and veg! Plus it's an excuse to try new recipes.

Eeviee · 24/05/2020 08:25

Hi ladies, I hope you are enjoying your weekends.
Has anyone done an unmonitored super ovulation? Ie just taking Letrozolle and then timed intercourse when OKPs show peak?
I think travelling from Scotland to London for mid scan cycles is going to be tricky. I'm trying to find somewhere closer to me that may offer a mid cycle scan. I just need to get some Letrozolle and also wait for my period to arrive so I know where I am in my cycle.
Thanks x

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HoldingOn2Hope · 24/05/2020 09:58

Morning @Eeviee, I was tempted not to go for my follicle tracking scan this cycle and posted on the thread to but I'm glad I did as finally I got to see the gonal f was working. Is this your first SO on letrezole? Dr S insists on the tracking although one of the nurses said to me in a roundabout way 'if you can't make the appointment because you're not well or your cars broken down then so be it'
Tbh I'm glad I did go as each time the letrezole dose was increased it wasn't working for me so that's the only reason dr s switched to gonal f. I guess you could miss it however you won't know if the meds are working for you? Also if you over-stimulate that can be dangerous too.
Maybe it's a good idea to try and get the follicle tracking done locally? Xxx

Eeviee · 25/05/2020 07:54

Thanks @HoldingOn2Hope. Yes it'd be my first SO, what dose did he start you on? I get that it's important to gauge follicle size so will see if I can get somewhere local to scan but don't know if I can. I know some people get prescribed Letrozolle and do it without trigger shot but was wondering if anyone had experience.

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HoldingOn2Hope · 25/05/2020 10:47

@Eeviee I was started off on 5mg, it was increased
to 10mg the following cycle as had no response whatsoever. Still not a great response to 10 so was out on 5mg of letrezole and gonal-f combination.
I was on clomid in 2018 and 2919 for 6 cycles in total by nhs consultant and was never given follicle tracking scans, Dr S seemed quite alarmed when I said I'd never had one as he insists it's important. But I guess the nhs don't have the time or funding for all these extras.
Has he offered to send out the letrezole prescription to you?

Eeviee · 25/05/2020 13:50

@HoldingOn2Hope yes he's said he'll post prescription although I haven't got it yet. He's starting me on 7.5g, I've never tried it before, or clomid. I definitely ovulate by myself although I do wonder if it's 'weak' , and Im hoping this will help a stronger ovulation. How are you feeling?

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HoldingOn2Hope · 25/05/2020 16:18

@Eeviee Ah good! Dr S won't prescribe clomid at all. He told me the risks associated with ovarian cancer were higher for clomid users and was annoyed if been given it without any follicle tracking. It worked for me although I lost all 3 pregnancies, it also thins the endo lining another thing I wasn't told by the nhs!
I'm feeling ok, which makes me nervous. Apart from being a little more tired than usual and tender boobs only is I apply pressure (they feel a lot more sore first thing in the morning) I have zero symptoms. I'm trying to stay positive but I'd feel better if I had symptoms.
I hope the letrezole works for you, it seems to h e for a lot of the others on the thread xx

Crystal2020 · 26/05/2020 10:51

Morning all. Hope you were all able to enjoy some sun over the bank holi. It’s my test day and I’ve just had a very faint positive with 2nd morning urine. Thought I could see something with 1st morning urine but couldn’t be sure (kind of had to turn my eyes inside out to see). It’s definitely slightly darker now than earlier. Just rang the clinic and the nurse said to keep going with the pred today/tomo and then test again on Thursday morning to see if it’s gotten any darker. I’ve never had a test this faint before but then again I’ve never tested this early before being on this programme... Not sure what to think but definitely not filled with joy based on how light the line is. X

KtAgs · 26/05/2020 11:53

Ooh gentle congrats @crystal2020. It must all be a bit nerve wracking. Fingers crossed it gets a bit darker on Thursday. Mine was super light too when I did an early test in previous pregnancies and a line is a line - at this moment - you are pregnant. 😊 i think that last bit is a mantra kittykat (can't remember the full handle) used to tell people. X