Immune/NK issues - aka Pred Thread no. 22!

[HappyApple05]

Helllooooo dearies

Opening this new thread looking for a light in the tunnel during my journey towards conception. Would be nice to walk along with people in the same journey. To cut my story short, 3 miscarriages and referred to Mr.S, diagnosed with high NK cells and lupus positive, already on levothyroxine. After 2 weeks of staring at the med pack, I have now finally started on Aspirin, Vit D and Pregnacare plus. Awaiting Ovulation to start on Pred protocol.

Miscarriage history:

1. July 2017 - In my 12 week scan, found foetus with no hb (6 weeks foetus size), devastated! Had severe morning sickness, didn't predict anything negative. Took my son (6 years then) to the scan planning to break the surprise where he could see his sibling in scan.. We all broke down, opted d&c

1. March 2018 - started bleeding in 6 weeks and miscarried naturally.

1. July 2018 - spotted in 6 weeks, scan at EPU no pole, returned when 9 weeks along, still nothing, opted d&c

Bought the ovu predictor kit for the first time, counting days to use it. Any of you in the same position? Would be great to hear your stories and cheer each other up towards the destination. Previous threads were beautiful, so supportive but sadly the latest post was in Sep 2017. So most of them would have crossed the bridge. Decided to start on a fresh thread.. So here we are....

Looking forward to catching up... Take care you guys.... Plenty of baby dust to everyone

@Smrahc48 pleased to hear that the scare turned out to be a nice surprise. All the best!! You mentioned nausea - are you on pred? If so, I heard that masks symptoms sometimes.. I'd be happy to get some nausea tbh just for that reassurance!

@Megan234 wow so pleased to hear that things are looking up! Stay positive, all the best!!

Thank you for the positivity! It's much needed. @Sunshineblonde1. How are you getting on?

Hope everyone else is going strong and getting along well with their protocol/journey. Thinking of everyone @DaniMERL @HappyApple05 @Widdendream77 @Chickjen @JoeyWally @PositivePeach

@LKM1 how's everything going? I hope you are well!

As for me, it's a waiting period until mid feb for the 6 week scan. I had my intralipids yesterday. Just trying to keep calm, have faith and not assume the worst...also bloating and heartburns are slightly better as I changed to eating little but few times a day.

Have a great day everyone!

Hey @Nixwix lovely to hear from you chick and glad to hear your doing ok 😃 I’m ok too. No real pregnancy symptoms yet, I’m only 5 weeks, just needing to pee a hell of a lot and the Pred makes me feel like superwoman 🦹🏼‍♀️😂 I have my 7 weeks scan mid Feb too. Like you I would love a bit of nausea - for reassurance purposes but the nurses did say that many women won’t get the nausea due to the Pred and I’m used to having sore boobs too but haven’t got that yet. But maybe it’s too early. Keeping everything crossed 🤞 X

Thank you sunshine! How are you? We must be around the same stage. I do feel more confident feeling sick, but at the same time I know how cruel this can be, so constantly on tenterhooks. I cannot look to the future and feel like I’m constantly telling myself to prepare for another broken heart. It’s such a strange feeling. My nausea has only just started, so I was takenaback when it hit. I was like you, strolling around like superwoman. The pred even seemed to help my sore shoulder. I literally can move about like a 20 year old!

Hi @Smrahc48, very happy to hear about the hb... You should feel strong and glad, last time it was a completely different story. This protocol will save us. Trust it.

And I was really thinking why there is no update from you and thought may be you are down with Nausea.. It used to hit me very hard and I used to be lying on the couch like a dead cow. The thought and smell of food would kill me. Phone is the last thing I would want to look at. I guessed you might be in the same situation. Embrace your nausea, good sign and everything looks positive, why worry hun?

Today I'm typing on my computer, so it's a lot easier, hency my lengthy message

Hi @Nixwix, you are on track and doing the right thing. Good to know the intralipids went well yesterday and that the change in food habits help with bloating. You will be there before you realize, hardly 2 weeks hun. Come back to us with the best news :-)

Hi @Sunshineblonde1, Wow you gals are superwomen with pred power!! you'll come back to us with the best news ever from the scan, it's nearly there hun. I understand what you mean with nausea, pred might cover it up or you could be having it from 6th week onwards..

Good luck to everyone looking forward to BFP this month!

Ladies with BFP - this is your sticky bean, enjoy your pregnancy!

And a very happy weekend to you all!

Lots of love
XOXO
Happpppy Apple

Hi everyone, just checking in before I'm internetless for the weekend! Lots of (now) positive stories this week, fingers crossed for all xxx

Sorry to hear your news @Widdendream77, you sound incredibly resilient, I too found the early ones easier to deal with mentally, but it is a sad situation that we all have been there to know that.

As for me, I am in limbo, not ttc at the moment as waiting for the test results, but it is now day 20 of my cycle and no sign of ovulation, my cycles are only 26 days normally so no idea what is going on. Hopefully some hormones resetting themselves after the mc at Xmas. So roll on mid Feb when I get the test results and then move house the next day, could be a life changing couple of days

Happy weekend to all!!

I had 3 early chemical miscarriages all at about 5 weeks

Tests at Guys Hospital London:

-Thyroid was 3.64 so borderline hypothyroid, thyroid should be 1-2 to conceive
So 50mg levothyroxine daily

-Clotting APS
Apparently 25% of early miscarriages are caused by APS!
Doctors won’t test for it until you push
IgM anticardiolipin antibodies 16
Ideal IgM anticardiolipin antibodies should be 1-10 MPL U/ml
So daily low dose aspirin 75mg while trying TTC
(Heparin as soon as positive pregnancy test)

For the fourth pregnancy I asked the hospital for low dose prednisolone and the pregnancy stuck and now have my 8 month old napping in next room.

I also took supplements:

Pregnacare Conception
Wild Salmon Fish oils Solgar
Ubiquinol Solgar

Good luck!

Hi @user1470147116,
Thanks a lot for sharing your story. Positive stories are really inspiring and motivating to all of us.. Sorry you had to go through the rough patch. Really glad to her about the rainbow baby. Lots of love to you and the tiny one. Take care.

Hi @Chickjen, exactly lots of positive stories now, very glad about opening this thread. I really do that we happily share the spirit. All the best to to you for the test results and house move in Feb. Hope it goes well for you. As for the ovulation, don't worry it will settle down in a month or two. Take care hun.

Quick question -I'm at epsom hospital (NHS) for my routine RMC appoitnment. Wondered if anyone of you are here now??? I look at every women's face and think, could this be her? If so, only wanted to hug you

Lots of love
HappyApple

Awww @HappyApple05 you are the sweetest thang! [big grin] Hope all goes well at the RMC appointment. Best of luck for your baby dancing this month. I have everything crossed for you. I feel something in my bones .

@user1470147116 thank you so much for finding us and posting, it has come at a really good time for us all in one way or another. We are all in the midst of our journey's! Would you mind me asking what on earth is the clotting APS? I had some blood clotting profiles done but it only came back with MTHFR heterozygous (the mutation that 40% of the population have). Your diagnosis on paper looks similar to mine above (Levothyrozine, blood thinners, baby aspirin etc).
What dose of Pred were you on and from when until how long?
Also - any words of wisdom from a gal who has been there and got the t-shirt? Being pregnant after so many loses is so nerve-wracking, any pearls you have may help up gain strength .

@Nixwix how are you doing?
@Widdendream77 sending love and a big hug. You are so unbelievably brave. Massive high five to that!!
@chickjen lovely to hear from you chick. Best of luck with the house move and don't worry about the weird ovulation. Every miscarriage alters our hormonal make up and our cycles adjust. Mine actually increased in length and you know some months its totally normal not to ovulate. I had a flashy face once for 6 days which made no sense lol! I never got a static in Dec! But fell preggo in Jan.
@Smrahc sending you lots of sticky vibes for your little bubbin!! We can do it!!!
Sorry if I missed anyone out, I am just catching up but thinking of you ALL.

From my side, I am just hanging around for me first scan at 7 weeks. Bit of a rollercoaster taking the feelings one day at a time. I can swing from hugely positive 'this is it' kinda feeling to 'OMG I can't even tell if i am freaking pregnant right now' and 'what if it was a dud egg/sperm combo'. My losses have been from 6-8 weeks so no where near outta the woods right now. I'm doing ok on the Pred so far. Bit of bloating here and there, and waves of tiredness in the afternoon along with some crazy hunger. No insomnia anymore, that's naffed off now and good riddance to it. I can't complain as I certainly am feeling a bit more limber in the gym thanks to the 'roids hehe!

Love and hugs to all x

@megan234 what news lovely? Xx

@Sunshineblonde1 @megan234 @Smrahc @Nixwix @user1470147116 @DaniMERL @Widdendream77 @Chickjen @JoeyWally @PositivePeach @LKM1 Hope I haven't missed anyone.. Please correct otherwise and I shall update the list.

Good Morning ladies,
Aw... thanks @Sunshineblonde1 The appointment went well, thank you.

Quick update from the appointment yesterday:
I was asked to continue Pred and the rest. Only change is that I was asked to take Cyclogest for 10 days from ovulation. Previously I was told to start Cyclogest only from BFP. The doc said there is a recent update to the instructions. So please get it confirmed with your doc if you are in my position.

All the best to everyone to your next successful stage. Sending plenty of baby dust and sticky vibes.

Lots of love and hugs
HappyApple
XOXOXO

@HappyApple05 thanks for sharing! That’s good to hear. Dr S advises to take Cyclogest from ovulation too - belts and braces! Love and hugs x

Gosh @HappyApple05, when was this updated? I never knew. I wasn’t at the hospital yesterday, but so often peek about the waiting room seeing if I can catch anyone’s eye! I wonder if we live close. Do you have to travel far to get to Epsom?
(Aware this sounds like a strange game of guess who!)

Wishing you all the luck xx

Hi @Smrahc48, not quite sure. She said 'recently' though. Yeah.. I was shocked to hear about this. Actually the doc didn't say anything about the update. But I spotted it when she went through my meds for a repeat prescription and I said 'I don't need Cyclogest as I'm not preg yet'. She then had to explain about the change. You'd be fine dear as you have gone past this stage now :-)

Aw.. we all are the same in checking to see if we could spot someone from this group. I'm based in Sutton. It's 12 - 15 min drive to Epsom General Hospital. Are you based in Epsom itself? I'll pm you hun :-)

Lots of love
HappyApple

@Sunshineblonde1 - Dear I'm under the same doc too. Glad that I caught up with the right meds now

Hi Ladies I need to ask for some advice.
Under Dr S protocol when pregnant he wants to scan at 6-7 weeks and at 8weeks (with 2nd intralipids at 8 weeks).

Cost of 6-7 weeks scan £420
Cost of 8 week scan plus intras £625

I am wondering whether anyone has skipped the first scan with Dr S and just gone to the EPU to determine whether there is actually a HB? My thoughts are that its a very expensive scan if the fetus is not viable and has no HB? Not sure what others think or did. I have no idea why they put the first scans so close together.

Thanks in advance for any thoughts on this x

@sunshineblonde1 I can maybe help with this.
I didn’t intentionally skip my first scan with Mr S (6.5 weeks) but I did also have a scan scheduled for the at before at local hospital because I’m still under the care of the fertility clinic there.
I believe from others that’s if you ask not to have the scan with Mr S he tells you that they are not optional and his treatment is not “pick and mix”.

However, when I had the bad news at my scan i didn’t see any point in going the next day. When I called and spoke to the nurses I thought they may make me go so they could check but they agreed with me. I felt reassured by this - that they were trying to fleece me with an unnecessary scan.
When i next went to see Mr s I thought he may question why I had had the NHS scan but he didn’t.

Sorry for the typos
That should read that the NHS scan was scheduled for “the day before”
And
That the clinic WEREN’T trying to fleece me!

@DaniMERL thank you, that is good to know. I think I may make myself known at the EPU next week and have a scan before the one due at his clinic as I see no point in shelling out £420 if this little one is not viable. x

Wow @HappyApple05 interesting news! Thanks for sharing. I guess it makes sense if I'm right in thinking progesterone thickens the lining for a good implantation, makes sense to thicken it well before the egg reaches.

@Sunshineblonde1 how accommodating are your local EPU? Would you have to lie about bleeding/pain to get seen? Mine is pretty good that after 3 mc's you can refer yourself at 6 weeks just for reassurance. If you can go to the EPU first and get good news maybe it will make the 420 easier to swallow if Dr S still insists on it. And if bad news (and God I hope it isn't) then cancel Dr S and save the money for next time.
Do I remember your scan is the 14th, that's the day of my appt, maybe we will bump into each other!

hey @Chickjen! Last time they said that they would see me early at the EPU because of the MMC so I think I will give them a ring tomorrow and see what they say if I ask for a walk in scan. When I was there last there were women walking in off the street asking for scans so I hope I can get one. If not I can get a private scan for £60 at a local centre if all else fails. I'd be happy then to pay the extra to see Dr S if they can reveal a HB at least :) You are right hunni my appointment is 10:45 at Epsom on V day - maybe we will cross paths!? Best of luck for your test results. Either way it will shed light on things and you can move forward!! x

Thank you @user1470147116 that was very useful!

As for me I am fine. But have been spending the last few days thinking what if this is not a viable pregnancy. I had twinges that shifted from right to left and then subsided. I wasn't that bothered but now hey are scaring me a little with the 'what ifs' and thinking of all the money spent and possible unfavourable outcome. I am trying my best to keep my mind occupied and be positive till 12th for my 6 week scan. My DH also got a bit of unfavourable news at work and he is a little down cause of that but showing a strong front and so am I.

Thinking of everyone here! Quite good that they are on top of matters with giving instructions @HappyApple05 Good luck to you and also @Chickjen ! Hope all's well for you too @Smrahc48

@Sunshineblonde1 I am on a similar boat actually and your question would have been mine too. It's all so costly and my ivf clinic offers the 8 week, 10 week and 12 week scan as part of the whole program so I am should take advantage of that, also since they know my history and details. Dr S wants me to go with him from week 8 onwards but it's double expenses for me... so trying to figure out what to do. Also Epsom is good 45 mins away for me.

Hi @sunshineblonde1,
Hope the scan at EPU plan works well for you. You could use the combo of previous losses + (fake cramping + spotting) I'm sure it will work and they won't have any gap to say 'No'. With my hospital (St.Helier), the norm is to ring them, get an appointment, usually it's the following day morning as they dont work after 13:30 hrs.
You will be in peace of mind if you could get the appt sorted the previous day. Allow plenty of time though as they usually run late.

And thank you for the wishes, BDed only once this month, I think 3 days before O. Didn't manage to do anymore due to circumstances. Keeping positive for the next 2 weeks and let's see.

Hi @Nixwix, Everything will be fine dear, it's easier said I know especially after being through the rough patch. I hope you are following the protocol religiously. Don't get everything mixed up in your head my dear. Your DH will get things sorted shortly. Following your scan appointment, everything will become positive and work out as per your wish hun.

@DaniMERL - lovely pearls of wisdom :-)

@Chickjen - You are right! Got to admit, I hate those pessaries though. It's leaving a mess, gross. Need to shop liners.

Lots of love
HappyApple

Hey @HappyApple05 how about inserting them up the back door? No mess then . Thank you I think that makes most sense about going to EPU, have just left a message with them so lets see whether they will see me! All the best for your next two weeks, I know it will happen for you soon, and I can't wait for that time for you and to hear that good news!! Massive positive vibes.

Hey @NixWix I am with you hunni, it's exactly how I feel too. But the twinges sound on track! Its everything expanding and making room down there - totally normal to feel those. We can do this!!! Sorry to hear of your DH unfavourable news, life has a funny way of throwing us some curve balls but it's always opportunities to grow and move to a better place. I hope the weekend brings better feelings for you both and some nice time together. With regards to Dr S and IVF scans - that does seem to be a bit excessive to have to do both doesn't it. Maybe you could do week 8 and 12 with Dr S to satisfy him. You are in very good hands either way.

Much love x

Hello @Sunshineblonde1, good going with the appt call to your EPU. Thank you for the idea re pessaries. Might sound very silly but 'Would it hurt?' Please excuse me. Got used to the ins and outs through front door over the years. But it's a bit scary/uncomfortable thinking the other way round. Is it just me feeling this way?

I'm posting this after a long thought process. Didn't wanna make you gals feel uncomfortable

Hey @HappyApple05 you should totally post things like that, that’s what we are here for, warts and all tee hee! Well personally I don’t find sticking the little blighters up the back door uncomfortable, and there is zero mess so I feel like I am winning at something at least. They are fairly soft aren’t they so tend to get swallowed up, up there. I had a day or two of wind at first but that passed. Maybe give it a try tonight and see how you get on. Also at BFP putting them up the front door can cause irritation and in some cases a bit of spotting, hence I opted for back door from the start. Hope that helps! X