Immune/NK issues - aka Pred Thread no. 21!

[Tee4me]

Roll call for all moony faces!! 🌝🌝🌝

Waiting for our rainbows 🌈❤️💛💚💙💜

Tee4me
Age: 34
TTC DC#2 since December 2015
x2 MCs (second was 'missed')
DS turns 5 this month 😱
Seeing Dr Shehata - diagnosed with Hypothyroidism and aggressive NK cells
Currently on cycle 2 of Pred and week 6 of Thyroxine
CD10, expecting to ovulate at the end of the week 🤞🏻🤞🏻🤞🏻

[HappyApple05]

Hi lovely ladies,

Would you mind if I join in? (towards the time this thread is about to close) I'm the culprit who opened thread 22 (sorry this thread wasn't active when I checked in Nov 2018, the latest post was from 2017 then), so posting the link below if you'd like to continue there....

www.mumsnet.com/Talk/conception/3402547-Immune-NK-issues-aka-Pred-Thread-no-22

To cut short my story, 3 MCs after my DS and referred to Dr.S on NHS (my local RMC) as I'm based in Sutton, Surrey. This thread gave me the strength and energy when I read through the positive stories and all the supporting msgs from the beautiful hearts. So started another one expecting to hold hands and travel this tough journey with the ladies in this situation.

For the past 2 cycles, I'm on Pred protocol + Vits + Levothyroxine + (to have Lupus positive injections and Cyclogest from BFP).. actively bding and looking forward to the BFP magic to happen.

I was tempted to check this thread when the ladies posted on thread 22 that they were active here. Hats off to the seniors and the current pred heads.. This is so supportive

XOXOXO
Happy Apple

[Sunshineblonde1]

Hey @DaniMERL apparently when you get to a 1000 messages on a thread you have to start a new one. I lady started a Pred Thread 22 back in November. I will tag you into it x

[DaniMERL]

@sunshineblonde1 please can you tag me?
How did a new thread get started, I don’t understand?

[Sunshineblonde1]

@LKM1 euch I feel your pain. I hope you can get some comfort from the fact that at 4-5 weeks it would be so unusual to see anything at all. This early testing is a mine field and often throw up more worry then is deserved. The 6 week scan will be the one to shed light. And also it certainly doesn’t sound like another ectopic and you haven’t bled which is another good sign it’s not a chemical or early miscarriage. And the HCG is multiplying - hey that is awesome!! This journey is long and frustrating -and because of what we have all been through so far it’s natural to expect the worst. Keep positive and believe in the best possible outcome until there is evidence of otherwise. big hugs and strength xxx

[LKM1]

Well it was unhelpful. They couldn’t see anything at all. But I am so early, and as I said they went off my last period date, not ovulation. I don’t think I’m even 5 weeks. So not sure if it’s chemical, or what’s going on. More bloods to see if they’re doubling. Trhey were at 500 on Monday so surely bowniver 2000 they should see something! So f*cking fed up of this journey now. Makes me angry, not even sad.

[Sunshineblonde1]

@megan234 I am being cautious too. I will test again over the weekend. My intra is on Tuesday AM if all goes ok on the next test. Fingers crossed for us all. Whatever happens - we can deal with it 💪💪 x

[Megan234]

Thank you @Sunshineblond yes I’m having intralipids on Monday if the pregnancy test is still positive🤞I’m coming down with something as well, I think the pred must be working x

@LKM1 good luck today x

[Sunshineblonde1]

P.S. I think once we reach 1000 messages we have to start a new thread! There is a Pred Thread 22 which I joined which was started by another lovely lady, and there are a couple of others on there too.We may have to shift across to there soon. I will tag the names of people into it over the next few days so we can keep the thread going x

[Sunshineblonde1]

@Megan234 oh my gosh incredible news, so excited and happy for you!! Life works in mysterious ways and never as one plans or expects it! I didnt think I was pregnant at all either. In fact when I did the test (rather unromantically in a train toilet) I tossed it straight to the side, it was only when I went to stuff it in the bin I noticed my 'squinter' of a line (11dpo), then did another then next day and line was getting stronger. I am now leaving it a few days until testing again. I am on day 2 of the Pred and didn't have a great night sleep last night which is annoying as like you I love my sleepy time!! Plus I now have a cold which is making me feel blah! I am having a coffee a day, if the palpitations get bad I will stop. Are you booked in for intralipids or to see Dr S? So sorry I cannot remember off the top of my head whether you are seeing him privately.

Good luck @LKM1 thinking of you and sending hugs and all the positive vibes across xx

[LKM1]

@Megan234 it’s improved a little. I’ve started sleep walking which I do when I’m stressed, but I think also connected to not being as deep a sleep.x

[LKM1]

I don’t want to go for this scan :( I don’t want to know if it’s over!

[Megan234]

@LKM1 I started taking steroids 2 days ago and now I’m not sleeping well, very annoying as I love my sleep. Has your sleep improved after taking steroid for a while or is it still the same?

[Megan234]

@Sunshineblond1 Wow congratulations, amazing news, I hope this will be the take home baby for you x

This month my GP suggested a blood test at 8dpo to check if I ovulated and to check my hCG level which confirmed that I wasn’t pregnant. On Wednesday my period was late and I decided to do a pregnancy test, to my surprise the test was positive 😊. I panicked because I didn’t take any steroids this month and it was 16dpo. I was 100% sure that I wasn’t pregnant because of the blood test and I didn’t have any pregnancy symptoms. Normally I get sore breasts and cramps but this time nothing at all. With all my 4 pregnancies I always felt implantation pains arount 6-7 dpo but this time nothing. I’ve done another pregnancy test this mornig and I’m still pregnant, thank God. I don’t know how this happened but life is full of surprises.
Let’s hope that this time it will work out for us, sending hugs xx @Sunshineblond1 @LKM1 I know exactly how you feel the fear never goes away xx

[LKM1]

Ha ha I know, trying to find the rose tints. I had bleeding and horrendous cramps from the moment my period was due with the ectopic, so I’m confident yours won’t be - but I do understand that sense of impending doom. It’s a very hard thing to shake.

Yes it’s nice to be honest and open in this group! I’ve told no one I’m pregnant, just husband. I never tell anyone now, it’s too tiring doing it every time. This is the first chat thread thing I’ve ever been on, I’ve read a gazillion though over the years I googled everything!!

That’s great if you can get the scan! And I love that people turned up unannounced - it’s so important for people likenus to get the care. It does feel a bit like we get shoved around and denied all sorts, it’s not really ‘care’. I certainly knew more about my body then any Nhs consultant, doctor nurse that I’ve seen. It’s been a horrendous experience to date, made a lot worse by the attitudes of the staff :(

Your aches and pains might be the steroids, when I first started taking them my heart raced a bit. I don’t sleep at all. But I’m not really aching, mention it at your apt.

Night x

[Sunshineblonde1]

@LMK1 Only ladies on this thread would be able to understand why one would ever possibly favour a miscarriage over an ectopic ha! I have not had an ectopic before but I’m now on high alert for impeding disaster sigh. So sad that we can’t just relax and feel joy at a BFP without the fear and worry niggling in the background. I guess once bad things happen the brain has a muscle memory !

Wow that is such a schlep and expense!! I really won’t grumble anymore about the 1 - 1.5 hour journey from Kent to Epsom!! Totally worth it to get a sticky bean and speed things along - we are in good hands with Dr S. Amazing what money buys eh The NHS gynos and Drs have unfortunately been useless to me. I felt like I knew more about fertility then they did.

The EPU have promised me an early scan after my MMC was picked up by a private scan last time. We will see....When I was there last time pregnant women were walking in with no appointments and demanding scans - and they got them. So hopefully I won’t have a battle on my hands. Though I do prefer the private ones in terms of sensitivity!

I just had some really weird dull aches and pains in various parts of my body for most of the day. They’ve gone now. Just unusual. Will keep eye on it and ask the nurses next week if need be.

So glad we have this thread to vent our thoughts and fears and get support x

[LKM1]

Have you had an ectopic before? I had signs last time, so praying this time I've not got one! Would rather have a miscarriage that another ectopic... I would rather not have either actually!!! They might not want to scan you so early, as there's not enough to see, but why not ask, it would be a good start :).

I know for me pregnancy number 4 they refused to scan me at all, I had to pay privately at 8 weeks. Glad I did as it confirmed another MMC, imagine I could have held onto that until the 12 weeks scan - again! I don't get why they don't help more, our sanity if nothing else. Then 5th pregnancy was ectopic, and because that is life threatening they actually have to take you seriously I assume!

Yes sunny Plymouth, a serious mission. Getting to Epsom I had to get a hotel the night before as it was too far to go in one day for the appointment time, it's a 5 hour train, not including the time to get to the stain from where I live.. hope it's worth it. Onto of treatment costs the travel and hotels are costing £200+ each time.. gulp.

What sort of aches? I have general cramps, and when I sneeze I think I am going to rupture something, RLP I assume. Who knows. I have been gagging in the mornings but it means nothing, I did with all the others haha!! Good luck asking for a scan, I reeeeally hope they allow it.x

[Sunshineblonde1]

@LMK1 I am a fanny too! I all but crawled out of the door when I had 20 vials of blood taken for Dr S’s initial tests 🤢 Hopefully I will hold it together for the Intra’s!

Wow Plymouth, that’s some travel, and there was me fretting about getting into London.

That’s good to know about the EPU I might give them a call in a week or so and request an early scan, they dealt with my two MC’s so said they would scan me early on the next ones.

I have some weird aches in my body - I wonder if it is the Pred? I didn’t think that was the side effects though.

Oh my gosh so sorry you had to go through that with the ectopic - it’s such a mentally and physically tough time. Good to get some peace of mind at the EPU tomorrow. I’m worried about ectopic because I’m feeling neurotic! Sending hugs x

[LKM1]

I had no after effects from the intralipid, I had to travel back to Plymouth devon from a epsom, and felt absolutely fine!

They’ll see if there’s something in the wrong place in the scan, not a lot else. They would also see if there’s a thinner uterine lining which can be a sign of ectopic, they might be able to see a sack. I think the nurse wanted to scan me at 6 weeks, but chose to go off my last period date, not the date I ovulated, I told her twice, so she probably assumes tomorrow I’ll be 6 weeks.... that’s her fault for ignoring me though!

No, my tube stayed in. My ectopic naturally sorted itself, HCG 1800 to 5 over a long period of time. Took 2/3 months... was hard. And some days very painful!! Makes me very anxious that a probably now scarred tube is still in there.. x

[LKM1]

Yes I inject clexane... just felt a bit different having more ‘stuff’ put in over a period of time?!? ( I’m a fanny...) x

[Sunshineblonde1]

@LMK1 thanks!! Least I know what to expect now. Unfortunately I am no stranger to needles as I have to inject Fragmin up until 6 weeks after birth - ECK!!!! Hate that part but hey ho! I look away at injections though!
I didn't realise they scan that early at the EPU? Can they even see anything so early on? Everything crossed for you hun for tomorrow let us know how you get on. What happened with when you had the ectopic if you don't mind me asking? Did you have to have a tube removed? (hope ok to ask .I have intralipid on Tuesday and then am straight into a client meeting in London so pleased to hear no side effects and it sounds pretty straight forward!!! x

[LKM1]

I’m not good with needles, or blood... so I didn’t look whilst they put in the intralipid. It was quick to set up. Whennit was in it was fine! Lots of seats in a room so lots of people come and go. Your partner isn’t allowed in there isn’t enough room. It was a bit crampy in the arm, strange sensation, slight discomfort but not painful. It was over in an hour! I read a book and chatted to one girl in there about her journey. It was nice seeing other girls with bumps too.. a bit of hope I guess. My first scan is tomorrow, epu, to check location as I’m at risk of ectopic. Then if that’s ok and it’s still in there next week Harley street for 6 week scan.x

[Sunshineblonde1]

Thanks @LKM1 that does make me feel better hearing that. Maybe I should just leave it a few days and test again then. What were the intralipids like? When is your first scan? Sending lots of sticky vibes x

[LKM1]

Yep! It begins! I had my first intralipid last week, it wasn’t as awful as I’d imagined. And no I meverbtestedbso early and am notbused to squinters, I did test again the day my period was due just for reassurance and the line was darker.. but as I all know seeing a dark line and even having morning sickness doesn’t mean baby for me!... I hope this is it this time, for us both!! Keep me updated sending you love! X

[Sunshineblonde1]

@LKM1 thank you x That makes me feel better. I’m used to seeing a big strong, but I’ve never ever tested this early before I used to test around the day of my period so it’s a bit scary to see a ‘squinter’ Lol! Ofcourse the neuroticism is already kicking in with fears - ach! I am about to pop my first ever Pred. And will call for intralipids. Fingers crossed the lines will continue to get darker. X

[LKM1]

That’s amazing news! My line was also faint at 10dpo. I also never had implantation bleeding in any pregnancy. But to get a line it’s definitely implanting! One day at a time x