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 🤞🏻🤞🏻🤞🏻

Haha I’m taking ubiquinol as well!

What is ubiquinol? Should I be taking it too? @Maddox @FannyDaggers

@Maddox I know I felt the same way- but my nk cells in pregnancy state came back very high. So I am really hoping his treatment is going to work

He told me if I want to go ahead and get pregnant without drugs I probably have a 30% of a successful pregnancy
If I follow his drug regimen there's more like an 80-85% success rate!

He's super confident and so many positive stories! We just have to go for it - I think. I mean I have and I'm gonna just roll with it and hopefully see my rainbow soon!

It's just crazy that my dd was conceived spontaneously and that whole pregnancy was so easy! And now I have to fork out thousands to get her a sibling! It's just feels weird!

@zarala ubiquinol is supposed to help improve egg quality, some info on it here: natural-fertility-info.com/antioxidant-ubiquinol.html
I get it off Amazon!

He certainly sounds very sure and those success rates are amazing, I have everything crossed that his treatment programme works for all of us!

I know what you mean @FannyDaggers, I don't want to waist any more eggs as well, I had 1 chemical misscarage this year and 1 missed 6 weeks ago. I'm seeing Mr S on the 13th June but my ovulation is happening in the same time and I'm not sure what to do if I should try or wait another month. I'm 38 next month and despret to have a baby.

Hugs @Megan234

Well appointment was a bit of a waste of time, at least it’s left me certain that trying a different route is the right thing! They’ve put me on the waiting list for a hysteroscopy (sp?) and a laparoscopy but I’m hoping i’ll have seen Mr S before that comes round and have had his test results back so I can be clearer on what I want to do next.

@FannyDaggers you are definitely going to see the right person, Mr S will help us I really believe in him. Has anyone else got pregnant while waiting for results? Not sure what to do, please help

@Megan234 have you seen dr s already? And taken all the blood tests?
Maybe call him and say that you want to try to conceive this month and see if he can see you before the 13th- you never know maybe he has a cancellation!

Thanks @FannyDaggers I will check it out
But aren't we supposed to start taking that like 3 months before TTC?

I really hope we can all get lucky with dr s! And he helps us all get our little babies

@zarala I’m not sure tbh, I’ve been taking it for a few months now although not helped so far!

@zarala I haven't seen him yet, I have an appointment for mid of June and then results on the 27th June. They hardly ever get any cancellations.
We will get our babies we just need to keep going and don't give up.

@FannyDaggers I have spoken to Mr Shehata’s midwife today and she said to take pregnacare max plus omega 3 and vitamin D but don’t take aspirin because it could effect the tests for thromobophilia

@Megan234 that make sense about The thrombophilia- I didn't take aspirin until after my first appointment with him (had blood test taken that same day- before I took aspirin)

@FannyDaggers sorry your appointment felt pointless. Was that at St Marys? The whole process is frustrating and soul destroying. We are all literally putting all our eggs into Dr S's basket. Lets hope he produces results! I am still really frustrated by having to wait until July - August i would be a basketcase!
@Megan234 do you have children? I have a boy who is 2 but cant keep hold of any more babies it seems.
I thimk i will have to have a hysteroscopy as i had infected retained products with the first miscarriage.
@zarala i suppose 30% chance withlut treatment is not THAT bad odds considering....makes it seem like it is a numbers game and eventually one will stick...
Is everyone going to the Epsom clinic or london? I live up mear Lincoln ia everybody else more local. Part of me hopes i have deranged killer cells so there is potentially something which can be done part of me hopes its egg quality so eventually it will happen....if i dont give up hope by then. Gosh this is a nightmarish procedure.
And yes ubquitin is supposed to help egg quality especially for those of advancing years (such as myself) but hasnt seemed to help yet. Did he mention anyrhing about what we should or should not eat?? My diet has not been great the last few weeks....good luck ladies!
@Megan234 let us know how you get on. We are getting us some babies ladies!!!

@maddox
I'm in London I had my first appointment with him there and then this week went out to Epsom it's like an hour and half away from my house - once I get pregnant (please universe Make it soon ! 🙏🏽🙏🏽🙏🏽) then I have to go to Epsom every fortnight for the mayonnaise drip thing - aka intralipids- 3hr round trip is a bit annoying/ but whatever if he makes it Happen for me I will do it!
I asked him about diet and he just said eat whatever you want but be sensible and eat healthily- he commented that I am slim (erm no I'm not really- still not managed to shift baby fat) and that I shouldn't worry about it!

He did say that steroids will make me super hungry ( I am always hungry and have a huge appetite btw) and that they may keep me up at night- so he agreed that I should do exercise every evening to balance this all out...can't believe I'm going to be on roids...I think my ovulation is coming up in a couple of days so I will be starting the treatment!
Oh and I decided to just go for it
Now that we know what the issue is....
You'll see your appointment will come up faster than you can imagine...Fx for you it's an easy remedy!!!

@maddox I haven't got any children, I will definitely let you all know how the appointment goes.
@zarala I'm sure you will not remember the journey when you have your little baby. Good luck with you treatment and I hope you will get pregnant this month.
How long does it take on average to get pregnant on prednisolone did Mr S said anything?

@zarala mayonaise drip...!! I hope it is a bit thinner than mayonaise!! It is a high maintenance regimen. But like us all think we will do whatever it takes (as evidenced by our willingness to part with huge sums of cash). I will try and find somewhere a bit more local if I need those infusions and scans I assume can be done anywhere. But time will tell....maybe I should phone his secretary and harass her daily until she finds me an earlier appointment. I won't really. But I would LOVE an appointment next week. Hope you have hit your fertile period and will be getting your BFP in two weeks!!! Good news about the food free for all. A forum I was on said absolutely no sugar (do not even LOOK at sugar), no caffeine, nothing but air (ensure it is not polluted) water and veggies or some advocate the keto diet. But I love carbs and I need a little caffeine in my life too.....
@Megan234 ahhhh I hope you get your rainbow soon. Guess you get your results in a few weeks so then you can crack on....though I doubt I will have the self restraint not to try whilst waiting....
Have you heard anything about steroids delaying ovulation? I read we should start it day after ovulation??

@Megan234 ah! I didn't ask him how long to expect it to take to conceive- he doesn't really give you a lot of time to think- feels a bit like he has a conveyor belt system tbh- but thank you! I hope it doesn't take too long to get pregnant!
Will keep you posted

@Maddox so I actually asked dr s about having scans else where and he said that he needs to do the scans up until 16 weeks because he needs to monitor how the medication is and alter the prescription if needed. With regards to the intralipids- I could be wrong but I believe he's the only person to do this???
So I don't know how we will get away from all these extra costs adding up...
And yeah just eat everything in moderation! I can't ever diet I love food to much!

Thanks @Megan234 vitamins ordered!
@Maddox no I live in Yorkshire so was an NHS hospital up here, doesn’t fill you with much faith when the dr doesn’t even know why you are there or that you’d had another miscarriage I will be travelling down to see him in Surrey/London which is a complete trek but hopefully worth it.
@zarala I hope treatment is going ok? Fingers crossed for you!

Thanks @FannyDaggers !
I've just started the pred today!
I'm a bit nervous about this whole process and trying not to dwell on the associated risks...Fx for BFP in 10 days!
I'll keep you guys posted on how the preds have affected me!

Has anyone experienced any negative impact from them? I just hope it doesn't affect the baby (when I finally have one!)

Hi Zarala, I had a bad time on Pred. I gained about a stone in a few months, had palpitations, sleep problems, anxiety, mood swings and occasional boils. I also developed luteal phase spotting from about 6-9dpo and much heavier and more painful periods. I’ve actually come off it because I’m sure it was stopping me getting pregnant; prior to Pred I conceived twice, the first time we tried, which ended in Mc, then again three weeks after my MC accident. Then I tried eight cycles on Pred and no BFP. I’ve only tried one cycle without it and not conceived. My experience is very rare; my specialist (not Dr S) confirmed Pred is likely the problem but said he’d never seen anyone else react to it that way!) I’m sure you will be fine on it, but I did want to share my story for anyone else who might have a similar problem some time.

@Zarala good luck I hope you will get BFP. My appointment for today has been cancelled as Mr Shehata is in hospital. Hopefully I will see him on Saturday if he is well enough, I’ve been waiting 6 weeks, but not a lot I can do if he is not well 😞

Thanks @PoppyJ1 and I'm sorry to hear how difficult your journey has been!
Who is your consultant? (If you don't mind sharing?)
@Megan234 oh nooooooo! That's such a bummer!
I hope he's ok! We need him!!!
How frustrating for you!

Hi @Zarala, I actual saw a couple of members of the endocrinology team at UCLH hospital. I have an endocrine condition that seems to be the reason for my MCs. No NK cells diagnosis.

@zarala I've been to see Mr S today and I need to go back on Monday for blood tests. Have you had any scans done with him?

@Megan234 yay glad you managed to see him! How did you find it?
He wanted to do a hysteroscopy but I haven't...I went to the nhs RMC on Tuesday and they did an ultrasound and told me they want to do a hysteroscopy because I've had 2 ERPCs and they want to make sure I don't have any scar tissue- so I am going to get the nhs to do it (trying to save as much as I can!)
We are TTC this month- we find out next week if it's worked or not. If it didn't we will stop TTC until I get the hysteroscopy done.

When do you get your results? In 2 weeks?