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

[Chickjen]

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

@Crystal2020 if you don't mind me asking what is your background? What made you go and see Dr S etc. Do you have any other auto immune conditions? X

Of course I don’t mind @ceebee21. I’ve had 3 miscarriages in under 12 months (last one was very recent). Not getting any answers and definitely not happy to ‘just try again’ so I figure now it’s time to call in the big guns & try to get this sorted. I read ‘Is Your Body Baby Friendly’ and some of it resonated with me so I thought looking at NK would make sense. I don’t have any other autoimmune conditions so I’m really intrigued to see the outcome of the tests. My husband and I both felt positive after our appointment and like we were finally dealing with someone who is a real expert in all of this as it feels like such a minefield sometimes. The ladies on these boards definitely know more than most docs I’ve seen so far! X

I know what you mean, I've had two since July; most recent in december and when I had my bloods done a couple of weeks ago my TSH was 4.5, the GP said its in range and I had to tell them it wasn't and made them change my thyroid medication. Just feel like it's not being managed correctly! She did send me for a load of bloods though, but they all came back normal x

Hi ladies, can I join in too? Been following this thread for a few weeks, have an appointment with Mr S next week and starting to feel really nervous! I guess because this feels like the last chance really as I'm 40 years old and not getting any younger! Over the last couple of years I've had 5 miscarriages, 2 failed ivf, and the last just before xmas was ectopic. To say I feel like I've been through the ringer is an understatement! Has anyone had success at a similar age? I'll also be travelling down from Scotland so its worrying me the cost of all this travel, not to mention the tests, eesh! X

Hi @Luckyducky2 and welcome to the club none of us wanted to be in :-)

I'm 40, had 4 MC within a year and am now 34 weeks pregnant after IVF. Stick with it. And throw a lot of mud at the wall: something should stick (something I find a lot more helpful than 'be positive' which makes me want to punch people in the face :-) )

Hi @KittyKatSmile, yes this is defo a club I dont want to be in Haha! But very reassuring to be speaking to others in the same boat, dont feel it's something I can talk to many people about (I even had family avoiding me at xmas because no-one knows what to say to me ). That's fantastic that the ivf worked for you - did you follow a treatment plan with Mr Shehata aswell? I'm not convinced ivf is the right thing for me as we have managed to get pregnant on our own and have a little boy so I know I can carry to full term but does seem something else is going on with me....though nhs just say it's my age and my eggs. So confusing! X

@Luckyducky2 tricky answer to that question. My last MC was under Mr S's plan before I switched to IVF. I'm not infertile per se but my baby is a donor one so I can't conceive the old fashioned way :-)
I made sure I went to a clinic that 'believed' in NK cells and their protocol was broadly the same as Mr S's.
Obviously IVF is very expensive and stressful but I like that it sort of takes a lot of things out of the equation, such as the risk that the sperm and egg just don't meet each other etc.
Ask any other questions you may have; there will always be someone here who can help

That's amazing @KittyKatSmile donor eggs are something I would definitely consider and I'm so pleased it has worked for you.....i had a look at our local ivf clinic and they send you to Spain for egg donations, might aswell get a wee holiday in there aswell! I feel like we are very much in the dark ages up here in Scotland, I was pretty much laughed at when I mentioned killer cells to my consultant! I guess time will tell, see what Dr S says next week....wishing i could fast forward time! You are probably feeling the same, those last few weeks of pregnancy are hard going! Wishing you a speedy and safe delivery when the time comes! X

Thank you @Luckyducky2. It's my own eggs but donor sperm. Would definitely agree with going to an overseas clinic. There's meant to be a brilliant one in Alicante; one of my absolute fave places for a long weekend so it feels like a real winner!

@ginandtonicformeplease @MrsMargot are you having any withdrawal symptoms weaning off the pred? It seems the reduction of 5mg every 3days might have been too harsh for me but I’m already down to 10mg...so what do I do?

@zoe16 No I've been pretty lucky I think - I'm down to 5mg every other day and no recognisable side effects. Could you call the nurses and ask their advice?

A bfn for me but was expecting that!
Will try and be more prepared next cycle :)

@ceebee21 I don’t have Hashimotos but I do have Graves. My TSH is currently 0.02 and TSH receptor antibodies are 5.7. I got fed up of waiting for an NHS referral and went private. The consultant wrote to my GP to tell him exactly which blood tests I needed. Could you try this if you don’t feel like you’ve been adequately assessed? I have now got an NHS consultant who told me that I should delay getting pregnant for a couple of years because if I try to get pregnant now then it will most likely end in miscarriage. It feels like a ‘computer says no’ answer and he’s unwilling to consider anything that’s more complicated than basic thyroid medication. I don’t have two years to waste so I may well end up going down the private route again.

@LockThayFridge yes I am seeing a private consultant on Tuesday. Hopefully she can help a bit more... I don't want to wait for the NHS to be honest.

I am also looking into getting nk cells tested at the Athens clinic... They are far cheaper than here, but I'm worried if they're raised that nobody here will treat me without doing their own tests at a premium xx

@HoldingOn2Hope me too 😢 Another month of torture for nothing.

Hi ladies,

I was wondering if you can please help, I've been on DR S plan for 4 months now.

Ive still not fallen pregnant and I'm wondering if anyone else had this?

If anyone has any tips? 😂

Honestly I just don't know what to try anymore. I've only got one tube and feel like my chances are probably slim anyways. Wondering what else I could do to try improve my chances really?

For those of you who have fallen pregnant on dr S plan, how long did it take?

Also what happens after your on his plan for 6 months?

Hi All,

For those that have seen Dr S - what is the protocol for trying during tests - does everyone get told to not try for a certain period, or only certain couples etc?

Thanks in advance

@ceebee21 as far as I'm aware everyone gets told not to try as it can make tests have misleading results x

Welcome @Luckyducky2, I too am based in Scotland which makes being under DR S care a bit more time consuming and expensive but hoping it'll be worth it. This forum is great for support, hopefully you'll find it useful.
@HoldingOn2Hope I need to pee all the time too...

@HoldingOn2Hope @FrannyAnny82 sorry for your BFNs - fingers crossed for next month xx

@zoe16 can you stay on 10mg for a few days longer and see how you feel? I was advised to wean off 5mg every 5 days.

@weddinghelp1 i think lots of people experience a delay in getting pregnant on the pred. I had previously been pregnant 3 times in 5 months and then it took me more than 6 months to get pregnant again, which I lost anyway. This time is an IVF pregnancy which is probably not what you wanted to hear x

@KittyKatSmile

It's not but thank you for replying to me?

How long was you on the treatment before they advised IVF? Xx

@KittyKatSmile congratulations by the way xx

Thanks @Eeviee. The pred really does seem to slow things down! X