Immune/NK Issues - aka Pred Thread no 25!

[Eeviee]

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

@CATALYST2019 I second what @hrtbrk2 has said. What dose of g-f are you on? I'm glad I've found someone else who's on it I felt alone lol.
It only takes one remember :) Goodluck xx

@HoldingOn2Hope thanks for your response, I'm on 150 and he said if I'm not pregnant this month he will increase dosage next month. Was hopping the smaller one would grow too so I have more of a chance but not sure if it's too small at 13mm xx

Hi @CATALYST19 he said to me that they need to be 12.5 to be viable to that means yours is definitely still in the running! Wishing you loads of luck with your cycle. X

@Crystal2020 hey thanks for that. I definitely feel better after all your comments. Thank u ladies. Good luck to all of us xxx

@CATALYST2019 ah ok, I was on 150 in march and had an 'ok' response and then he up'd dose and had a very good response, 5 follicles on left and a couple on right.
I hope it's positive news for you 🤞🏽

@HoldingOn2Hope wow that's an amazing response. Sending you lots of luck ..thank you so much, feel much more positive now xxx

Hi
I’ve come across it searching online. I’ve just attend started a treatment plan with Dr Shehata for NK fell issue and thyroid problems.

I’m only on the first month of tablets and TTC - but I’m so confused. I was told to take the Cyclogest for 10 days after ovulation and test - if negative stop if positive continue. I waited an extra day or 2 before coming off but tests were negative so stopped the Cyclogest. Then started to have some spotting after 2 days which after reading said was normal for coming off Cyclogest. I don’t know why but at the back of my head I was nervous - I’d still been testing and getting negatives even that morning, but I did a test thag evening and it said positive!!! I’m now freaking out as I’ve started bleeding. Is there a chance it’s a false positive? Has coming off the Cyclogest ended a potential pregnancy???

It’s the wknd so there is no one at the CRP clinic to contact!!

I really hope someone is still on this thread - thank you xxx

Hi @Florencetay2020 the cyclogest is progesterone which your body will be making anyway, it is just an extra pregnancy 'help'. Have you tested again with first morning urine? If it's still positive start taking the cyclogest again twice a day. Are you also taking aspirin? If so stop that for now until the bleeding stops.
What tests are you using? First response early response are the best for testing so early. I assume you are also taking hydroxychlorine and levothyroxine? These are the important ones for NK and thyroid so do not stop these!
Personally I would keep testing to check the line progresses but some people prefer to wait and see. Good luck! 🍀

Hi thank you so much! I am on aspirin and I took one last night but will stop today.

I took a progesterone 400mg last night. I was on 800mg for 10dpo then it said if pregnant drop to just 400mg. Do you think I should go back up to the 800mg? So that’s one in the morning and evening.

I’m on HCQ and Thyroxin at the moment as wel.

Typically last nights test was my last one but will go and buy another. The bleeding is a bit worse today so I’m some ways I don’t want to do another test but I guess I need to know what’s happening. Thank you

@Florencetay2020 yes go back up to 800 while you are bleeding unless you get a negative test. I had bleeding in my pregnancy which turned out to be ok so it can happen. Fingers crossed it can be the same for you 🤞

Thank you. Sorry for all the questions - but what do I do now?

I didn’t take one this morning - if I take a 400mg Cyclogest now how long to I need to leave it before the evening dose of another 400mg?

@Florencetay2020 I would take one now and take tonight's at your usual time, I don't think timing is critical for cyclogest.
Don't be sorry for too many questions, that is why we are here 💐

Thank you. I took another test, a clear blue one as couldn’t find any first response and it’s negative so I’m going to assume it’s negative. No idea what caused the positive on the first response yesterday 🤷‍♀️

@Florencetay2020 I'm sorry to hear that, what a torturous day you've had 💐 is it possible it's too early for the clear blue to pick up? Or is that prolonging the torture? 😥

It was a clear blue early detection test so it should have picked it up - I normally prefer the first response ones but I’m not holding out hope. I wasn’t surprised it was negative as I’m still bleeding.

I’ll retest in the morning and also speak to the clinic just to be sure. Thank you so much for your help I had no idea what to do. In some ways I wish I hadn’t tested but then again I’m glad I did as I think I need to speak to them about next time and how long to stay on the progesterone for. X

@Florencetay2020 hello, the cb early detection gave me a negative but I tested with frer and it was a bfp. Sadly I went on to mc. I would do a FRER again and call the clinic xx

Hi All,

I had a webinar open day with Dr Gorgy, just thought I'd listen in to what he does etc and he gave 10 mins to each person to ask Q's. He said something which I know I've asked the Q before on here, he said NK cells should be tested during pregnancy and with days of a mc too. He said the accuracy of how aggressive nk cells are is when the body is upset or going though changes eg pregnancy/miscarraige.
How do I ask the clinic this without offending them? 😑 I've still not had a reply to my last email.

Hello all,
im totally new to mumsnet so not really sure if it works and if I can just join a thread but here goes...Firstly sorry to anyone on this thread..im sure we have all been through the same rubbish journey to get here but delighted that it looks like a lot of people have had/having their rainbows.
I've just had my results from Mr Shehata (3 missed miscarriages all at 7 weeks and 1 chemical) but they were totally normal. Urghh . After years and years of testing, surgeries, hormone treatment etc I was convinced immune problems would be the issue. He has still recommended that I go on hydroxychloroquine plus progesterone from ovulation but ive just lost faith in my body. I have a son from surrogacy and trying to decide whether to go down that (very stressful and expensive) road again or try his protocol. Do you know of anyone who has had normal results but been successful on immune drugs? xx

@HoldingOn2Hope I’m sorry I’ve not been on here for a little but just wanted to say I’m sorry that things are so rubbish, I was really keeping everything crossed for you. I think you are incredibly strong & hope that your baking is helping (I love baking too) x sending you lots of love xx

@pineappledreams welcome to the thread and sorry for your losses.

Yes I had completely normal test results from Mr S (had high uterine NK cells when tested in 2015 by another consultant but then when retested in 2019 all fine). On paper there is absolutely nothing wrong with me. I am currently 24 weeks (I also have a daughter who is 3).
I was on hydroxy, pred, prog & aspirin. Now just on aspirin x

@pineappledreams sorry I should add that I’ve had 5 mcs (1 chemical x4 missed early miscarriages). 3 pre daughter & 2 in between her & this pregnancy. Last 2 I was on steroids - change this time was hydroxy plus taking steroids from ovulation

@HoldingOn2Hope one of the blood tests Mr S does is to put the NK cells into an artificial pregnancy state but if you wanted to test when you are actually pregnant (or any other time) I don't see why they would object or why you would have to explain why you are requesting it. Although to get a true measure presumably you would have to not be taking any pred/hydroxy/intralipids at the time which of course runs the risk of MC.

@pineappledreams having paid for the tests and consultations maybe it's worth a shot on his plan? The drugs are actually the affordable bit! And at least then you will know you have tried.

@pineappledreams

I’ve only just started on Dr Shehata’s plan but I have the NK cells and a thyroid issue. I had 3 miscarriages at 17, 10 and 8 weeks.

I think even if the results had come back with no known causes I would still have tried a treatment plan he’d suggested because you just never know, it could make a difference xx

@Chickjen that makes sense. I've finally had a reply from the clinic to book in for an appt with Dr S in 6 weeks time. I'm not sure what I'm going to do. Might have a couple of weeks to think about it. Xx

Hi all, I’m new to this group and am currently going through a third miscarriage in the last 5 months.
Feb- missed miscarriage at 9 weeks found at private scan heartbeat stopped at 7w4d
March- miscarriage at 4 weeks
June- missed miscarriage at 8weeks found at private scan heartbeat stopped at 7w3d.

I’ve got a scan at my EPU on Wednesday and spoke to my GP today who has said the EPU should now refer me for tests. What tests should I ask for? Also how long do you generally have to wait? I’m in wales and have found that there are no recurring miscarriage clinics on the nhs so want to make sure I know what to ask for.
I will go private if I need to and don’t get any answers x