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Immune/NK Issues - aka Pred Thread no 25!

(505 Posts)
Eeviee Tue 19-May-20 19:57:57

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

OP’s posts: |
Crystal2020 Tue 19-May-20 20:03:03

Thank you @Eeviee for getting us going on the new thread! X

peperethecat Tue 19-May-20 20:06:52

Hello! smile

HoldingOn2Hope Tue 19-May-20 20:20:52

@Eeviee thank you for creating the new thread smile

@Ultra26 Ok, I'll probably have the antibody test and as I'm at home and do is hubby I won't be switching to hydroxy either not now anyway.

I feel quite nervous but have been better today with my anxiety.

Hope everyone else is doing ok this eve x

HoldingOn2Hope Tue 19-May-20 20:22:48

Ladies can I just ask what dose of Vit D do you all take? I take the 1,000 units as my Vit d came back a bit low last summer. Had it tested after the 3rd miscarriage. I had a re-test in October it was a bit better. No longer in the insufficient range but it wasn't that much above it.

peperethecat Tue 19-May-20 20:29:22

I've been taking 4000IU for about the last six months. My levels were only just within the recommended range at the end of September and a few weeks ago they were in the middle of the recommended range. I think it's quite difficult to over supplement.

Doughnut100 Tue 19-May-20 20:29:58

Oh hello can I join? Like you say it's the club I wish I wasn't in. I'm 36, I've been TTC for 18 months, had two missed miscarriages with spotting at 12weeks but babies stopped developing around 8 weeks, in between them I had an ectopic pregnancy that miscarried at 6 weeks. I have subclinical hypothyroidism, currently on 25mcg levothyroxine.

peperethecat Tue 19-May-20 20:41:55

Hello @Doughnut100. Welcome!

Wireless77 Tue 19-May-20 21:15:50

Hello from me as well. 3 chemical pregnancies and one missed miscarriage at 9 weeks (month and a half ago). High NK cells and autoimmune thyroid illness with high TPO antibodies (currently in remission, likely thanks to hydroxy). No living kids yet.

FrannyAnny82 Tue 19-May-20 22:07:11

Thanks for setting this up @eviee! Welcome @Doughnut100 and @Wireless77 sorry you find yourselves here but the group is an absolute saviour ❤️ So sorry to hear about what you've both been through, it's so tough.

@HoldingOn2Hope that is a cracking line! I'm so chuffed for you. I take 2000 vit d and am still only in the lower end of normal.

I'm going to the clinic for the antibody test tomorrow so that Dr S can decide whether it's pred or hydroxy when we next try. Fingers crossed for hydroxy. The pred gave me tinnitus, insomnia and a skin infection. I can't hack it.

Sending positive thoughts to everyone who is pregnant, luck to everyone waiting for test day and hope to the rest of us in between xxx

Crystal2020 Tue 19-May-20 22:20:40

Welcome to you both and sorry to hear your stories @Doughnut100 and @Wireless77. Xx

Good luck tomorrow @FrannyAnny82. I hear you on the pred front. This is my last month of it while I swop over to hydroxy and it completely changes me as a person. I didn’t sleep at all last night (was up eating crisps like a loon at 1am because I was starving!) and I’ve been such a cowbag to my husband today because of how rotten I feel. Can’t believe it gave you a skin infection and tinnitus you poor thing!

@HoldingOn2Hope I take 4,000IU vitamin D as I’ve always been on the lower end of normal. I sent off for a Medichecks testing kit today actually as I want to make sure I’m keeping an eye on it. Like @peperethecat said, my nutritionist said she has never seen someone over do vit D even with high levels of supplementation.

KtAgs Tue 19-May-20 22:31:15

Thanks for the new thread @Eeviee. Sorry you've been having a rough time. It just catches you sometimes doesn't it? Proper sucks. Sounds like you've had some good suggestions. Gardening has helped me. My rather dark humour likes that at least something I try to nurture grows. ❤

Welcome @donut and @Wireless77 - although sorry you're here at all.

I didn't get any emails or notifications for like 3 days and thought it was a bit quiet and it has all kicked off massively in an amazing way! Gentle congrats @ultra26 and @HoldingOn2Hope.

I'm with @FrannyAnny82 about winding down with wine. Good luck for the antibody test. I'm having mine in a couple of weeks.

I hope everything is OK with your ovulation @peperethecat. I know very little about the tx that had been offered to you but I just wish it was an easier journey!

Such a lot of news on here and it was lovely catching up with the messages. Take care ladies xxx

HoldingOn2Hope Wed 20-May-20 07:42:02

@FrannyAnny82 @Crystal2020
Oooh maybe I need to up my dose of Vit D. I've just looked at my results and the range is 50-250 and mine was 56 so I guess that is the lower end too. I've been taking 1,000 (25ug) unit tablet and the prenatal has 10ug. I just hope I haven't messed it up for this time 😬

@KtAgs Thank you! Still very early days and I'm more nervous about my appt today then anxious which I guess is a bit better than I was when I had my last bfp last April. Xx

HoldingOn2Hope Wed 20-May-20 07:54:31

Hello and Welcome @Doughnut100 @Wireless77

Eeviee Wed 20-May-20 08:40:54

Welcome @Doughnut100 @Wireless77 . Sorry to hear of your losses, I hope you'll find this group supportive.
@HoldingOn2Hope I'd really recommend getting your Vit D tested. Either by your GP or as they aren't always happy to, then through Thriva or Medichecks. Vit D is key for fertility and pregnancy, but it's also possible to take too much so it's important to keep an eye on it. Hope that helps. Hope you are feeling ok and intralipids go well today x
@FrannyAnny82 I was lucky to have few side effects from pred (apart from I'm sure my face grew fuzz, anyone else?!) but I haven't had much since being on the pred, maybe slight nausea but minimal. Did you hear Trump going on about it in the news? Hope it doesn't create a shortage now 🙄
@KtAgs thanks, yes gardening is very therapeutic- I've planted out my
Whisky barrels and now planning on growing some herbs- wow so middle age 😂 Will toi be in hydroxy and pred together?

OP’s posts: |
HoldingOn2Hope Wed 20-May-20 09:00:24

@Eeviee I had it tested in October and gave the results to Dr S he just recommended I take a Vit D tablet which I was anyway so continued but I may just get it tested again today at the clinic. In all honesty my gp has always been amazing she's done tests for me that Dr S required to save me some costs but right now I'd rather just go into the Epsom clinic and pay then go into my gp surgery. I just hope my levels are ok, I just freak out about everything. It's awful what a history of mc's does to you. I've just said to my DH when will I ever be okay with all this? Truthfully I don't think my anxiety will go away throughout a pregnancy until I actually had the baby.
Deep breaths and trying to stay positive and calm. Xx

HoldingOn2Hope Wed 20-May-20 09:04:34

@Eeviee I've just popped another Vit D pill 😬
Will ask the clinic today what they recommend. I take a Holland and Barrett Vit D but gp prescribed me some so collected that prescription yesterday and they are the same strength x

peperethecat Wed 20-May-20 11:27:30

I got my progesterone levels checked this morning and my level was 12, which means I must have ovulated. I'm going to go ahead with the second Ovitrelle injection and start my progesterone supplements today.

KtAgs Wed 20-May-20 12:08:00

Ah glad you have some more clarity @peperethecat.

I thought I was so clear about when I ovulated as have easily got pregnant using an app, monitoring CM. But this time I've decided to pinpoint ovulation for the pred and have been religiously using the Clear Blue Digital Fertility Monitor for two months (which I have never done before). Between both months, my ovulation dates were about four days apart (13/14 and 16/17). I was shocked! It's expensive though.

peperethecat Wed 20-May-20 12:22:00

I bought the Clearblue Advanced ovulation tests a couple of months ago because I wanted to try and see if it could shed any light on the reason for my thin lining. I figured that if I didn't get a noticeable estrogen surge before ovulation then that would indicate low estrogen which would probably give me an answer.

Well the first month I tried using them I got a peak reading on CD10 and that's how I found out I was actually pregnant (with another non-viable pregnancy).

The second month I didn't actually need them because by that point I was doing a monitored cycle and getting blood tests. But I got a flashing smiley on CD13 and the day after that my blood test confirmed I was having an estrogen surge and I had EWCM starting on that day and an ultrasound showed my lining was actually normal. So I didn't really need them but I do think they are helpful in terms of showing when your estrogen levels start to rise.

HoldingOn2Hope Wed 20-May-20 12:33:09

@peperethecat @KtAgs I use the cb digital ovu tests too and I agree it does vary each month.
I've found them useful though, I don't always get a 'high' just the peak face.

peperethecat Wed 20-May-20 12:37:53

When do you start using them? If I've understood correctly, you're supposed to start using them around a week before you expect to ovulate, when your estradiol levels should still be low. That allows the test to establish a baseline estradiol level and then show a high reading when it detects your level rising. The LH surge turns the smiley static, regardless of your estradiol level.

If you aren't getting a flashing smiley then it may indicate that you don't get much of an estrogen surge prior to ovulation, or it may mean that you're starting the tests too late when your estradiol levels are already high and so the test isn't picking up the surge.

Have you ever had any blood tests done mid cycle?

HoldingOn2Hope Wed 20-May-20 12:40:15

So I've had the intralipids, it was a little drama as like I said I faint at blood tests so the bloods that were done (liver, kidney, thyroid, covid antibody) did make me feel all faint and queasy I felt so silly! Took a few mins to come around and once the intralipid drip was in I was fine. It's actually when I see blood I faint.
Midwife said it's 2,000 units if Vit D so need to take 2 tablets and she said if I'm within the range as my last test shows and have been taking supplements it's fine. I did show Dr S the tablets I was taking at the initial consultation and he didn't say anything more unless it was written in my pack and I missed it.
I did ask to have a re-test but Midwide didn't think it was necessary and said to just double up from today.
I feel better and a lot more positive but it's still very early so I need to find a balance btw staying positive and not getting my hopes up too high either.
Hope everyone is ok and enjoying the sunshine.

HoldingOn2Hope Wed 20-May-20 12:42:21

@peperethecat I kind of start them 5 days before, sometimes I get the flashing and static and other times I just get the one. I've had the mid cycle tests done and they have all come back fine. In fact when I had the ovulation bloods done my then consultant said 'you definitely ovulate' as the numbers were higher than he thought they would be.

peperethecat Wed 20-May-20 12:44:29

Have you had your estradiol levels checked just prior to ovulation?

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