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Immune/NK issues - aka Pred Thread no. 23!

996 replies

Chickjen · 11/09/2019 22:33

A quick introduction to this thread.. it has been running for many years and is a group of women who have experienced recurrent miscarriage and are now exploring immune issues as a cause. We have members at all stages, from waiting for first appointments, mid treatment, to take home babies. Please join us if you are experiencing this too, loads of friendly advice here and somewhere to share your hopes and fears.
@KittyKatSmile @DaniMERL @Megan234 @Wishing5tar @ginandtonicformeplease @Pop1234 @Belarita @Naticle @EmsIMO @MrsMargot @kdd1980 @MairMum18 @Wewin @zoe16 @fnej01 @Hopeful07 @Cream123 @Anatrina @summertimehere @Lau2019 @PoppyJ1 @WeeGi @RedPandaFluff @Chilliandlime @Thumbellini @AcornHill @Maranello4 @Sunshineblonde1 @Nixwix @HappyApple05 @Widdendream77 @Zest11 @mezgaski

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HoldingOn2Hope · 18/12/2019 11:57

Hi All,

Can c0q10 or other vitamins be taken alongside impryl?
My OH has been taking c0q10 for the last few months but only 100-200mg daily, I've read it should be around 600mg for it to make any difference?
Xx

Eeviee · 18/12/2019 12:03

Ladies can I ask have you all found FRER to always be pretty accurate in detecting early pregnancy? My period is late by a couple of days but FRER shows nothing, not even a faint line. My cycle was always 28 days but recently has been 26 days, I'm not entirely sure when I ovulated last month ,so I took pred for 10 days from approx day 14 and tested on day 24 which was negative. Also tested day 26 and 29 but both negative. So I'm assuming AF is on the way but I suppose I'm looking for any tiny glimmer of hope. x

HoldingOn2Hope · 18/12/2019 12:04

@EmsIMO I do find it like that at the clinic, although I'm happy with all the tests and the efficiency of results, the consultants kind of just leave you to it. I saw Dr Jan as Dr S wasn't at available for my follicle scan and he was so vague. The nurse got the impression I was a little confused and came and spoke to me in the waiting room about the scan and what the next stage is. Spending £400-500 for a 11 min appt and then be given no info. I don't expect a cup of tea and a hour long chat but at least a action plan. He literally said 'follicles are quiet, abandon this cycle or try naturally if you want' that was it!
I did look up Mr Ramsay yday. At the same time I'm thinking I've fallen pregnant 3 times in 18 months and yes I've miscarries but was that the nk cells or the sperm?
We will start impryl, keep ttc and start steroids and see what happens. At least if no luck I know that he's on impryl so when we do repeat test it should give us better results if not then will see a urologist.

MairMum18 · 18/12/2019 12:25

@Belarita I'm so sorry for your news. I don't know what to say except that your time will come, I know you may feel disheartened but don't give up!!

It makes my news a little harder to say, as I want to be as sensitive as possible (and boy have I had my fair share of insensitive people), I had my scan yesterday and all is looking well at the moment, measuring correctly with a heartbeat. I'm trying to not get too attached as I know things can change pretty quickly, but so far so good. I have another scan on New Year's Eve so hopefully I will return with another positive update.

Hope you all have a great Christmas. X

EmsIMO · 18/12/2019 14:33

Hi @Eeivee Yes I've found them to be the most accurate for me. They've shown negatives for me all year while I've been under Mr S's treatment plan, but these last two cycles have shown feint positives when I've tested, then nothing 2 days later so I think I've had 2 chemical pregnancies back to back X

@HoldingOn2Hope I have seen Mr Jan once and found him to be as you've said, rather unhelpful whereas I find with Mr S he gives you the full picture (although I always still walk away confused!) I think your plan sounds like a good one and yes my husband takes other supplements alongside Impryl X

chlo04 · 18/12/2019 14:33

Hi ladies,

For everyone who is on DR S High plan, can I please ask how many months on his plan it took you to fall pregnant?

Thank you

HoldingOn2Hope · 18/12/2019 23:51

@EmsIMO I'm glad I'm not the only who thinks that then! He didn't even make eye contact when talking! Oh well I'm going to stick to my action plan and only see Dr S in future.
@chlo04 sorry I can't help as I've only been on his plan for 1 cycle and unfortunately my ovaries didn't respond to letrezole so will be doubling dose next month. How long have you been on plan? Xx

MrsMargot · 19/12/2019 03:29

@HoldingOn2Hope my OH did not have to take impryl but he was under the supervision of my nutritionist and she gave him a whole host of supplements. He was on 200 Ubiquinole (the active form of Co Q10) and she was saying that this is enough for men to make a difference. I was on a lot more (started at 600 and gradually went down to 200). I would say that because Ubiquinole is a supplement he can take it along his medication. I cannot see why not. Xx

MrsMargot · 19/12/2019 03:30

@MairMum18 wonderful news! 🤗😍

HarrietM87 · 19/12/2019 08:11

@chlo04 I fell pregnant second cycle last time (I was 30 at the time if relevant, 3 previous mcs). This is my first cycle trying for baby 2 and I’m 32 now.

EmsIMO · 19/12/2019 10:29

Hi @chlo04 - I've done x6 rounds of Letrozole, the last round taking quite a high dose and have yet to get pregnant. My last two rounds I did have 2x chemical's, so a reaction of sorts. We're having a break over Xmas and might try one or two more goes before heading for IVF. We will have been with Mr S a year in February so this is the natural route for us. Good luck X

LockThatFridge · 19/12/2019 16:10

Just stumbled across this thread. I hope it’s ok to join. I’ve recently been diagnosed with an overactive thyroid. I’m awaiting the results of my antibody blood tests but my doctor thinks the likely cause is an autoimmune disease-either Graves or Hashimoto’s. The diagnosis coincided with me ttc and I had a chemical the first month of trying. I’m now taking medication but from what I’ve read, the graves/Hashimoto’s antibodies might cause a problem. Does anyone have any experience of this? Is there anything I can do to improve my chances?

KittyKatSmile · 19/12/2019 20:16

Hi @LockThatFridge and welcome. Most of us here (I think?!) have got high Natural Killer cells. I've also got high thyroid and have been taking levothyroxine (and am now 29 weeks pregnant after 4 miscarriages). Feel free to ask anything here; these ladies are the best x

Eeviee · 20/12/2019 14:55

Ladies have any of you found the pred / progesterone to delay your period? If so by how many days? My cycle has been approx. 26 days since my last mc, I'm currently on CD32 and AF still hasn't arrived but I'm getting BFN so assuming AF is just late as i think it'd show up by now if I was pregnant. Thanks x
@MairMum18 congratulations! Wonderful news xx

Ultra26 · 20/12/2019 15:49

Yes! Happened to me this month but AF finally showed up today on CD33. I'm seeing Dr S on Monday so it on my list to ask him.

chlo04 · 20/12/2019 16:04

@Eeviee yes!! I spoke to the dr about it when last was there and said it's fine .. I'm just not falling pregnant either! I'm wondering if it's to do with the meds ! I'm also VERY spotty!!

Eeviee · 20/12/2019 16:24

Thanks @Ultra26 @chlo04
It’s hard not to hope that maybe you’re going to get a bfp but I doubt it now. Have been getting odd symptoms too like needing to pee lots, feeling very bloated and lots of cm, it’s so confusing. Thanks for your replies x

Ultra26 · 20/12/2019 16:46

@chloe how long did it take you in the past to fall pregnant? This worries me too but all we can do is keep at it.

chlo04 · 20/12/2019 16:51

@Ultra26 the first time it took me 11 months and then after my first misscarriage, I fell pregnant the following month, then same happened again and I fell pregnant and had a ectopic. Then left 3 months and then fell pregnant straight again after that.

This time I've been trying 5 months, 3 of those on treatment and nothing :(

I feel really emotional this cycle. Could be because it was around this time last year I had all my misscarriages but I'm really starting to worry I'm in for another year of hell 😢

Do you fall pregnant easily?

I've got this odd feeling I am pregnant but every test is saying different and I'm 11dpo today so would defo show up. Guess my medication is just making me feel extra emotional!

Ultra26 · 20/12/2019 17:09

@chlo04 bless you, it's a really difficult time of the year to be going through all this so you feeling emotional is completely understandable. All I can say is hang in there and I'm sure you will get there. Fingers crossed you are pregnant this month and you've just got a shy bean.

It hasn't taken me longer than 5months to fall pregnant and currently on month 2 of the treatment but like you I'm worried that the added pressures will long this out - hopefully not though. It's a scary thought having 2020 be a repeat of 2019!

All the best x

zoe16 · 21/12/2019 13:40

Hi ladies, hope everyone is doing well. Just a quick update to say that I had my 8wks scan and all is well. Still anxious but starting to believe this could really be it🙏🏼. Another two weeks countdown begins!

Merry Christmas to all, hope the new year will bring more bfps and rainbows💜

chlo04 · 21/12/2019 21:36

Dr s gave me enough meds for 2 months and then I didn't fall pregnant so we went back and now I have enough for another 4 months. If I don't fall pregnant in 4 months does anyone know what happens after please?

ginandtonicformeplease · 21/12/2019 22:35

@zoe16 That's fantastic! Well done Smile The time between scans seems to go really slowly. I've got my nine week scan coming up, but as nine weeks will be Xmas Day I'll be going in on Monday. I'm dreading it - both previous pregnancies stopped around this time and I found out at the nine week scan.

KittyKatSmile · 21/12/2019 22:38

@ginandtonicformeplease I know what you mean; I was a wreck at my first scan because that's when I'd previously found out. Monday is so soon and then you'll know. In all likelihood you'll look back on this and be telling people about your experience just the way that I am. Please let us know (if you want to, of course). Rooting for you lovely xx

ginandtonicformeplease · 22/12/2019 00:07

Thanks @KittyKatSmile, I'm trying not to think about it most of the time, and then obsessively monitoring symptoms at other times. Don't even get me started on the day that my nausea completely left and I was right as rain!