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Immune/NK cells - pred thread 29

1000 replies

StillTrying10000 · 19/02/2022 20:14

Starting a new thread as the last was full.

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6
birdbybird · 19/08/2022 12:05

@Amy00 at your age you have good reason to be optimistic. I’m sorry about your 7 miscarriages :( . PGT-A with immune testing is the light at the end of the tunnel for me too
My clinic said I can transfer after 1 cycle.
I’ve just spoken to the embryologist at the clinic today… they’ll send the cells for Pgt-a testing next week. Then I’ll expect the results up to 5 weeks later. Such a waiting game ….

Hayley220 · 19/08/2022 14:17

Hi everyone! Im currently waiting to see Shehata or one of his consultants via nhs in epsom, anyone done this or in the same boat?

My story is 2 miscarriages, healthy child born 2020, followed by 2 miscarriages. All nhs testing has come back normal so I want to check nk cells. Does treatment for these reallt work?

I have found the last 2 miscarriages have been very similar with a hematoma next to the sac (but no bleed.. always a missed miscarriage) so i wonder if its an implantation issue?

I am 36, but i am guessing by the time i have been seen and put on treatment.. i then need a few months for the meds to kick in? So realistically another 9 months to a year before I can ttc again? I dont want to spend thousands if nhs will work, however i know i cant get intralipids on nhs. Am i wasting time with shehata on nhs?

Tgrf55 · 19/08/2022 17:57

Hi @Hayley220 sorry to hear about your losses. I'm not sure on timelines re NHS but once you have your results you can pretty much start treatment right away they just ask you to not try before they have your results and work out the best plan. How big was yout hematoma with your MMC's if you don't mind me asking?

I guess if you see him on NHS you could get the intralipids via his private clinic and you'll still be saving so much money by getting everything else via NHS. It can get really pricey.

As for whether it works he has a 80% success rate....my friend had 3 miscarriages and is now 33 weeks pregnant after seeing him and following his protocol so fingers crossed. I guess we all just have to try and hope for the best xx

Ralowi · 23/08/2022 08:51

@Tgrf55 yes I have, it's pretty much how I learned about the whole reproductive immunology stuff! Very interesting. I still can't believe it took me over a year to realise this was even a thing. Thankful for mumsnet!!

I have just read elsewhere that 174 is the average number of nk cells in the womb. I just wondered if dr s bases the meds dosage on each woman's individual number or if it's over 200 everyone gets put on the same? Mine is 248 for example so not massively high (although slightly over borderline for activity)

Tgrf55 · 23/08/2022 08:56

@Ralowi I'm not sure but I think he tailors everyone’s plan differently depending on results. Mine was only around 100 I think but my activation markers are 1.81 (very high) so I’m on 25mg of pred per day. Been taking them for 8 weeks now and actually haven’t had any problems really…. Hoping it stays that way 🤞🏼

whatsgoingon22 · 23/08/2022 10:27

Hey all,

Hope people don’t mind me popping up to ask a question. I went to Dr Shehata twice in Jan and March this year. In March he gave me the results of the NK cells which all came back fine except the implantation marker which came back raised. He wanted me to go on Humira for a month and to see if the levels would drop after that before starting me on the steroid treatment. My mental health has been really s**t for the last few months after 4 miscarriages and I wanted to take time out so I’ve left everything and tried to sort my head out. But now I’ve just got a really faint line on a test this morning and we weren’t even trying. He told us not to get pregnant while going through the whole process….. has this happened anyone else? Will
he be able to help me with anything now or should I bother even going back to him to tell him ? Last thing I want is ‘i told you so’ ☹️❤️It’s so frustrating that a line can’t equal happiness after so much heartbreak x

Tgrf55 · 23/08/2022 11:16

@whatsgoingon22 congrats! I would contact the clinic ASAP personally. The quicker you're on the meds you need the better. X

whatsgoingon22 · 23/08/2022 11:41

Thank you @Tgrf55 but I'm more worried that I haven’t started anything new so I don’t want it to end the way the others have….. kinda annoyed with myself now but thanks for your message x

Tgrf55 · 23/08/2022 13:28

@whatsgoingon22 if you contact them though they'll probably put you on a treatment plan straight away. Last time i was at the clinic i was talking to a lady there who had the same thing happen and she started the treatment when she was already pregnant. She's quite far along now so it luckily worked out.

Amy00 · 23/08/2022 13:44

@whatsgoingon22 I agree, call the clinic and let them know, as you've already had testing and two consultations they should be able to put you on a treatment plan and they can post your meds out by special delivery to arrive the next day.

Lots of other clinics in the UK start prednisolone (if this is what is suggested for you) on BFP (DrS prefers starting at ovulation but just letting you know other clinics have different views so don't worry about not taking it up to now).

I also had humira a year ago and understand that is this very "cutting edge" and there isn't a huge amount of research on it for miscarriages so don't worry too much about missing out on that at this stage!

whatsgoingon22 · 23/08/2022 13:56

@Tgrf55 and @Amy00 thanks so much for your responses again - really appreciate it as thought I may get told off 🫤and sent packing.

Thanks guys, will do that, that’s really helpful and calmed me down a bit x

Amy00 · 23/08/2022 14:03

@whatsgoingon22 no problem - good luck and tentative congratulations on your BFP! Fingers crossed for you, let us know how you get on 😊

Sezmarelda1 · 24/08/2022 10:18

I have my fingers crossed for you @whatsgoingon22! I'm under the care of a different doctor who recommends starting treatment from a positive pregnancy test like @Amy00 mentioned, so please don't feel that all hope is lost 🙏

Sezmarelda1 · 24/08/2022 10:28

I had an 8 week scan on Monday and all is looking good so far with this pregnancy. Annoyingly I started spotting the day after the scan so all the reassurance from the scan vanished in an instant 😩It's brown spotting so I'm telling myself it's probably just old blood dislodged by the scan probe, but it's hard not to worry that it's the start of another mc. I've been able to find the fetal heart beat on my home doppler so that's helped calm my nerves, but still my nerves are feeling rather fried at the moment!

birdbybird · 24/08/2022 10:40

Thats great news @Sezmarelda1 although I’m sorry about the spotting and the worry it’s causing… but seems good news so far!

I’m the opposite… not pregnant and would be happy to see some spotting so I know the period is finally on it’s way after an MVA 4 weeks ago.

I’m getting really restless as have no idea where I am in this cycle. Got some white discharge today but mostly dry.

Tgrf55 · 24/08/2022 11:47

@Sezmarelda1 - is the home doppler reliable? I am tempted to get one but scared that i won't be able to find a heartbeat, even if there is one and i don't want to freak out. I have my 10 week scan in a few days and SUPER nervous.

whatsgoingon22 · 24/08/2022 12:17

@Sezmarelda1 although did another test this morning and it’s looking more faint than yesterdays faint one which isn’t good news…. Let’s see I guess 🤷🏼‍♀️

whatsgoingon22 · 24/08/2022 12:18

@Sezmarelda1 congrats on your 8 week scan and @Tgrf55 all the best for yours too xxx

Sezmarelda1 · 24/08/2022 12:49

@Tgrf55 fingers crossed for your scan! This is the fourth pregnancy I've used my doppler in, so I've become at bit of a wiz with it. I absolutely wouldn't be without mine. I can normally first find the fetal heart beat around the 8-9 week mark. I've heard other people say it's really difficult to find that early and therefore not worth trying, but that's been my experience. I used my doppler a lot during my successful pregnancy and it greatly helped to reassure me between scans. Sadly I also discovered my two second trimester miscarriages with my doppler. They were both difficult times but ultimately I was glad to know sooner than later so that I could seek help. In some ways I think it was easier finding out at home that those two babies had died, rather than it coming as a complete shock during a scan and potentially getting weeks down the line not realising.

When I got my doppler I watched a few videos on YouTube to get an idea of what the fetal heart beat sounds like and where to place the probe. It's quite a distinctive sound but unless you know what you're listening for you could easily think you've found it when you haven't. I usually find that once I've found it two or three times it's much easier to find again next time, because I know roughly where to place the probe. I definitely wouldn't be without mine!

Tgrf55 · 24/08/2022 13:33

Thank you @Sezmarelda1 i'll have a think about whether to get one or not! I struggle with the anxiety between scans so it might be useful but i have also read a lot of people won't pick anything up this early so i guess it just depends on the person and also your expertise in using them! Hope everything goes well for you at your next scan x

InvisibleDreamer · 25/08/2022 14:15

Hi All,

Has anybody had a hysteroscopy & laparoscopy at the same time? I need some advice about recovery time please. I’ve been told 2 weeks however I need to know whether I would be able to drive and stand up for an hour teaching a class before this? I can avoid lifting but may need to bend down.

Any thoughts appreciated I have to make a decision whether to book operation by tomorrow morning & being self employed this could really mess up my return to work as I run 6 week courses. 😬

Tgrf55 · 25/08/2022 16:32

@InvisibleDreamer I haven't had a hysteroscopy but i have had a laparoscopy for an ectopic and i wasn't in a good way for a good few weeks afterwards. I could barely move - it's different for everyone but i wouldn't expect to be driving personally. Teaching a class i guess it depends on how you are feeling within yourself and it's hard to predict. x

InvisibleDreamer · 25/08/2022 17:11

Thanks @Tgrf55 I guess I’ll have to accept I’ll be out of action for a few weeks. Couldn’t be at worse time really but I really don’t want to delay either.

Tgrf55 · 25/08/2022 17:40

@InvisibleDreamer :-( you may not be feeling so bad, i just remember how awful i felt but maybe it's different with an ectopic as i was also in a lot if pain before the surgery Everyone is different but you should take it easy because if you over do it you'll just delay your recovery. Understand its annoying missing out on work though. Wish you all the best. Xxx

Sophi81 · 29/08/2022 12:25

So I thought I'd be happy taking a break but it's not really helped. I actually feel more depressed and I feel like I'm wasting time. But then I remind myself that I have to take a break anyway after 6 cycles of superovulation. Still doesn't help the situation 😩

As for the ivf! I was looking at the prices at CRP. I was told you get discount if you had superovulation but it only looks like £500 discount. I am thinking is it worth me going there for that or just go somewhere local. Has anyone actually had ivf at CRP and what was the experience like. My husband said maybe CRP would be best as they have our full records and test results so everything can done there. I’m sure others have mentioned that other ivf clinics dont do immunes etc.

Also, does anyone have pcos and if so how are you managing it? I been reading online that exercise and diet helps but it's all so overwhelming Im just so confused about it all and don't know where to start.

@MrsMargot I feel like nhs are not interested. I even told them im struggling to get pregnant and I've not had any guidance of where to go next. Probably not interested because i was with CRP clinic 🤷🏽‍♀️

@Ralowi how is your sleeping coming along since you stopped the pills?

@Tgrf55 wow that's amazing if you did on 3rd cycle. I hope and wish you have a smooth pregnancy x

@birdbybird are you having ivf via CRP? I turn 42 in June. I was hoping to have had a baby before I turn 42. Don't think that will happen now 😬. Did you get the results back from the tissue in the end?

@Amy00 thanks for the Facebook group. I joined and noticed someone posted about Dr S last week. Not sure if you saw it but they were not happy with CRP and ended up with Tommys in the end and is now pregnant.

Another question for everyone, has anyone been to Tommys?

@Tgrf55 I listened to the podcast you recommended. It was definitely interesting listen.

@Hayley220 I had one successful pregnancy with CRP. Been trying to having another for 8 months but no success ☹️

I know that dr s has 80% success rate (me being one) but does anyone know of anyone having had a second successful pregnancy with CRP?

@whatsgoingon22 congratulations on your pregnancy 😃. Did you manage to get in contact with Dr s and what did they advise with getting pregnant before treatment?

@Sezmarelda1 congratulations 😃. Are you with a different clinic? And if you are taking meds after positive test then surely this method works so not sure why there are different opinions at CRP. Dr s did mention in his podcast that by this time it's too late. But obviously thats not correct in your case.

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