Immune/NK cells - pred thread 30

[Sezmarelda1]

Starting a new thread as the last one was full. Please tag anyone I may have missed from the old thread...

@Sophi81
@InvisibleDreamer
@birdbybird
@Ralowi
@HoldingOn2Hope
@MyEasterEggs
@Tgrf55

@Hayley220 hi lovely! Yes I remember! Have you had an initial conversation with one of his team? The issue I had was that the time from start to finish has taken absolutely ages. Referral Feb - Phone consultation June - bloods taken July - results September (but they initially wanted to have that conversation in Oct which I pushed back saying 3 months for results was ridiculous - they wouldn't release anything to me). If you have high NK cells like I do, you have to start taking hydroxy but you can't try the 1st month as it's not effective. This is our 1st month 'trying' but I'm spotting today so it's not been a successful month. The hydroxy has been fine - no symptoms but I am finding my colds are awful. So much worse than usual and I'm not sure if I just have some nasty bugs from my DD or if the hydroxy amplifies it. I've been chatting with another lady who had success 1st month and she now has been prescribed pred too. I think this a bit different than if you go private with Dr S clinic. I wasn't overly impressed with the consultant who dealt with me - she didn't answer any of my questions and just focused on the NK cells without giving me any info about anything else. I do understand that my bloods in other areas were normal but it would have been nice to discuss those. Sorry for the long post! I just think it's good to know the full process as I can't find much online from anyone through his NHS clinic. Let me know if you have any other questions? Xx

Hey Ladies,

Longtime luker here but finally feeling brave enough to join in with the thread

A little about me, I’ve had 3 losses this year, 1 mmc, 1 chemical & 1 complete mc - I’m currently under Dr Shehata for borderline nk cells but on the complex plan due to my history, so Pred, progesterone, intrilipids and infolic alpha for PCOS

I’ve been lucky enough to fall pregnant on my first cycle and I went for a scan last week where I should have been 6+3 but only measured 6+1 I know this is so common and not a cause for concern everything else was fine and a normal heartbeat etc. Dr Edge mentioned I could have ovulated later than I thought and expressed no concern

Fast forward to today 1.5 weeks out from my scan and I get this in the follow up correspondence:

‘The CRL measurement is slightly smaller than expected and a normal looking yolk sac was seen, the fetal heartbeat was clearly seen and heard. The discrepancy in the CRL size could either be that you ovulated later in your cycle, or a sign that your pregnancy is not heading in the right direction’

As you can imagine the last sentence floored me, because a) I know how common measuring behind is in these early weeks and b) she said nothing of the sort in my scan. I’m not naive, I know it’s super early days so anything can go wrong but I just don’t think that sentence was necessary especially not to someone that’s had a history of miscarriage!

Have any of you ladies had the same sort of thing from Dr Edge? I really liked her but after this I don’t feel great about her

@Hopefulnumber4 Wow - the wording they've used is really quite something 😳 but to reassure you, when I went for my 12 week scan with my 1st child, she was measuring 6 days behind. I never questioned it and neither did they - she was healthy and overdue. I was certain of the dates I O'd (I even check my chart now as it makes no sense) but I don't think ovulation is straight forward and dates can be a bit wobbly. I wouldn't think 2 days difference is something to worry about at all 💕 what a way to add to the anxiety!!

I know right @bunnykins123 I had to re-read to check I was actually seeing correctly

Measuring two days behind wasn’t something I was ever concerned about as I’ve heard so many times it’s normal in the early stages, so I feel like the Dr just put a tonne of fear in me for no good reason - thank you for the reassurance though, that does help ❤️

Hi all, great to so many positive stories on here lately. However, I just wanted to post in solidarity for all of us who haven’t had any good news snd who are struggling. I check in and wish everyone well but wanted to whenever all those who have t had such an easy time. @VenusStarr, Sophie and all, I hope you’re all ok. I’ve had a break after solid heartbreak for two years. Sending much love to all those still trying x

**Wanted to remember those who haven’t had such an easy time. Sorry my phone goes a bit mental typo wise when I try to post on here sometimes. Wishing you all a lovely wkend x

Hi @Grateful03 thank you so much for your nessage ❤️ this year has been really tough and I haven't been doing well mentally at all. Taking a break is so hard, we have had a couple of months off and I've found it difficult but necessary after months of setbacks on top of my grief. Sending you lots of love xx

@Hopefulnumber4 i can imagine the anxiety that caused you reading that. Did you contact the clinic about it? I would agree though with previous posters, lots of people measure behind. My friend consistently measured behind the whole way through her pregnancy and her little girl was fine. I also have a friend who is now discharged from the clinic and just had her little girl, she was always 4 days behind. It’s really hard to get a correct measurement early on. I won’t say don’t worry because I know you will but try to be reassured that this happens a lot. Hope you’re ok.

I’ve tested positive for covid. So upset about it and going out of my mind with worry. The clinic and my local midwife aren’t concerned and said I have to just ride it out. I’ve had it several times now but I’m so worried it will affect the baby. I should be 19 weeks tomorrow. Just yet another anxiety 😥

sending love to everyone and of course those who haven’t had good news yet. Xxx

Thanks for replying @bunnykins123 my first appointment isnt for another month yet. Its face to face and they will do bloods the same day. Was your app with Miss Vanswanatha? Not sure i have spelt her name correctly but thats who my app is with. So because your nk cells were only slightly raised they prescribed hydroxy and no steroids? Thats good news I guess and good you havent had side effects. Did they suggest taking aspirin too? Im concerned how long results will take with christmas etc plus like you said you have to take hydroxy for a month first before trying? Best of luck to you its so nice talking to someone who is under the same hospital. Will you have early scans there? Xx

@Tgrf55 so much anxiety, today I feel a little calmer however I have had mild cramps all day which is a worry but I’ve learnt by now that whatever is going to happen will happen

sorry to hear you have covid, an extra stress that you don’t need at the moment, fingers crossed it’s over quickly

Just to say I’ve been following this thread for a while and I think you’re all incredible, it’s not easy what we’re going through, there’s many women that couldn’t handle the pressure but here we are trying our best and hoping for the best every day xx

@Hopefulnumber4 that is pretty blunt wording from Dr Edge but as others have mentioned I wouldn’t be concerned, especially as you can’t know for sure when you ovulated. She really shouldn’t put anything on those letters that she didn’t discuss with you during the appointment, especially if they are going to send it 1.5 weeks later! Do you have your 8 week scan coming up soon?

@Tgrf55 sorry to hear you have COVID.

Hope everyone else is ok.

@Ifitistobesaid agreed, had she of said this at the scan I wouldn’t have given the letter a second thought

Yes, I have my 8 week on Tuesday so luckily not too long to wait, going into it now expecting the worst but hoping for the best

@Tgrf55 I’m sorry you have covid. Hopefully it passes quickly. One of my friends had covid pretty badly in the 2nd wave when she was 23 weeks pregnant, things she done was drink 3L of water daily, Vicks on her chest and soles of her feet every night, used a vicks humidifier at night & took paracetamol regularly to stop reduce any temperatures. Not sure of your symptoms but she said she felt like it was a very heavy cold/flu. Her & her wee boy were fine and he’s a healthy wee chubby babe now 😂

@Hopefulnumber4 my first scan at 5+6 I measured a day behind, my last 2 I’ve been 2 days ahead. That’s with IVF aswell so dates are exact, I think it’s so small that measurements aren’t completely accurate. Although, I def understand it’s a worry. I’ve had cramping some days also, I keep getting told it’s normal and aslong as it settles then there’s nothing to worry about. I’ve just decided to take it one day at a time and like you think what will be will be, but it definitely doesn’t help with the anxiety.

Sending love & prayers to everyone’s who’s found their way onto this thread ❤️

@Hayley220 oh that's good it's face to face! I think half the problem I had was it was all done over the phone. God knows why... 🤷‍♀️ no, I think the protocol for NHS vs private is different regardless. NHS is hydroxy then pred at positive whereas I think private is pred after O? I could be wrong though. I did start taking it but stopped taking it as all my clotting tests came back normal. Do you know you have high NK cells or just have a suspicion based on losses? Yeh they will offer lots of scans up to 12 weeks (if we ever get to that point!!) xx

Since some of you are a bit further on I wonder if you could answer a couple of Qs?

Have any of you had NIPT? I’m weighing up the Harmony, Panorama and SAFE tests. If we have a positive experience at 8 weeks I think I’ll book one for 10 weeks.

Also, are any of you having intralipids? If so, how long did you carry on for?

Hope you’re doing okay @Tgrf55 💛

@MyEasterEggs Hey! I had intralipids every 4 weeks from positive test to 16 weeks, so 4 altogether. I also had a harmony test at 10 weeks I would recommend it because it’s so much more accurate than the NHS test. My harmony results were less than 1 in 10,000 for trisomy 21, the NHS test was 1 in 5000 I think which is still low but I’m glad I had the harmony any way for peace of mind.

thanks everyone for your well wishes with my yucky covid infection. @LuckyNo14 thank you for the tips! I’m just so worried it will harm the baby but staying away from Dr Google

hope everyone has had a good weekend so far xx

@Tgrf55 I had my first dose before transfer, second dose is tomorrow at 6 weeks, so I’m going to ask about having them at 10 and 14 weeks as that would give me more reassurance since my second trimester loss was at 16 weeks. It doesn’t feel like enough to have a single dose!

Have you had flu jab and covid booster too?

@MyEasterEggs I also have intralipids every 4 weeks until 16 weeks. I think that’s pretty standard for Dr Shehata’s plan.

How was your scan yesterday?

@MyEasterEggs i have to be honest I’m not a massive believer in the intralipids I feel like it’s a big money making thing. But obviously I could be totally wrong so I have them because I don’t want to chance anything!!

no, haven’t had flu jab yet but as soon as I’m recovered I definitely will. I won’t get the covid booster though. I’ve already had 3 covid jabs and this is my 3rd time being infected I should have so many antibodies 😂

@Ifitistobesaid it went really well, thanks. The nurse did an abdominal scan and said we probably wouldn’t see much besides the gestational and yolk sacs. But she zoomed in and there was wee heartbeat. Still hard to believe things might keep going well after so many losses but I’m hopeful. Just trying not to get too attached to the outcome 🙂

@Tgrf55 I’m sceptical too but like you will do whatever it takes!

Hi all, last week I had a bunch of immune tests done via Dr Shehata's clinic. I don't have the results of most of them yet but they emailed last week to say that the TBQ test was indeterminate and needed to be redone. They said that it is not the same as a test error but didn't tell me anything more. So obviously I have googled and it could be a sign of immune-suppression.

Has anyone had an indeterminate result like this?

Hi @AdviceForJane sorry I’m not sure what the TBQ test is for, is it for tuberculosis?

@Ifitistobesaid yes, it's for TB and is apparently a standard part of Dr Shehata's protocol. I've never had TB - at least as far as I know!

@AdviceForJane Hopefully it’s just a glitch and the second test will clear things up. It’s a pain having to pay for the test twice though. I think he tests for TB because he can’t put you on certain medications if you’ve had it - I could be wrong about that though.

Can I join?

I've been ttc for dc2 for very nearly 5 years. Including 3 surgeries (2 to remove scaring in uterus), 5 failed ivf transfers, 1 brief ivf pregnancy and 3 early miscarriages. The brief ivf bfp was with CRP treatment plan and was the first time we'd got as far as a heartbeat, so was progress. I'm now doing my first proper superovulation round (had two previous ones cancelled at scan stage due to retained products from previous mc that turned out to be scaring). I'm 40 and on 75 letrazole and took a ovidrel 250 trigger last Tuesday with 3 follicles getting ready. I'm on prednisolone, hydroxy (my hair is thinning!), intralipids, metformin, levothyroxine, aspirin, cyclogest, inofolic, coenzyme q10 and probably some other stuff I've forgotten!

I'm going to try and read through the thread and catch up. I don't know how I didn't find this thread sooner! I guess I normally hang out in 'infertility'.

Solidarity to all who find themselves here.