Immune/NK cells pred thread #32

[VenusStarr]

Hi everyone. The last thread is filling up. Have tried to tag everyone who posted on the last few pages, but feel free to join / tag anyone I missed.

@Gizmo1983
@fleur89
@Sunflower360
@MotherOfShihTzus
@lozzmax
@HopefulH
@kea1990
@Sprinkleofbabydust
@Newbeginnings22023
@star2022
@RumandSpinach
@Ems123456789
@MamaW05

Love to all ❤️

Had the call... 6 fertilised normally! 🥹 in shock really. We've only ever had 3 per round and this was my 5th try.

I'm provisionally booked in for Wednesday transfer on day 3 and they're thawing my frostie regardless but the embryologist (who was lovely) said they'll see how they're all doing and they may suggest pushing to Friday. I am anxious about that and not having anything though.

What do you guys think?? X

@VenusStarr wow that sounds amazing what fab news woohoo. I wouldn’t know about what day to go for sounds like you have a good embryologist who has your best interest at heart xxx

Hi @Meg310532 thats so strange, i also had rubella vaccine when i was younger - i think its something to do with auto immunity... and can be related.

So I went to CRP after three miscarriages in July last year and was put on Hydroxy and Intralipds, he was really reluctant to put me on the pred as how is affects mood. I get pregnant quickly and have never had an issue with Ovulation - so after two months i got pregnant again in October, but found out i was expecting triplets; which has a much higher miscarriage rate anyway - so the reason that miscarriage happened was due that and apparenlty they couldn't check if it was from NK - despite being on his complex protocol.

I then had a break as was waiting on cytogentic testing - which has always come back as they were chromosomally ok. My 2nd MC with the CRP was this June - again we fell pregnant quickly after three months of trying - but this was a blighted ovum - which now i think could be down to the Polycystic ovaries.

After two - he said lets try Pred, so have added that in and now trying with intralipids. He hasn't suggested super ovulation. Do you know why he has suggested this for you? Could you try on the other meds normally without super ovulation for 3 months?

@Gizmo1983 - ahh so that is the one that has stuck :) - I might ask my GP and see if i can get referral. and then maybe i would just need to pay for the PGTA testing myself.

@lozzmax - i remember you saying about IVF and sounds like he said the same thing to you. This gives me hope and so glad you're over half way there.

@VenusStarr - Lucky number 7 indeed. Its so tricky to know what to do and what day to transfer and i am not that well versed in IVF - what does the embryologist suggest?

Yes you are an influencer - i even gave my husband some yesterday too and he liked it. xxx

@Jecca88 so sorry to hear about your tough times, that’s so shit :( ! He suggested the letrazole as my cycles are a bit irregular and my ovulation is always quite late at like cycle day 22 so it’s just to bring forward ovulation and make it more regular. It took me a year to first fall Pregnant, I then fell pregnant in November last year which was a chemical and then again in February which was a missed miscarriage I started bleeding on my 12 week scan day and then got pregnant again in June with letrazole but ended in a chemical. I think I’m just inpatient and would prefer to give myself a better chance of getting pregnant the first month as I will have more than one follicle. Where abouts are you in your cycle now ? I am gutted I can’t try this month but know that I will be able to next cycle which gives me another month off trying and stressing I suppose :):)

@Meg310532 thank you! it's such a shit journey, but need to remain hopeful i will get there. I am so sorry about all your Miscarriages, sounds so rough and up and down and very quick succession- I can totally understand why you would want to just do the super ovulation and hopefully works first time. Have you got Hydroxychlororquine? and Pred? I had to have the Hydrox build up in my system for a couple of months before I could try when i first went back in August last year.
I too had a missed miscarriage and found out on my 12 week scan for my first pregnancy, that trauma still sticks with me daily. I just wish i could go back to being blissfully pregnant without worries before that day.

Yes enjoy this month off and get ready for next :)

Currently waiting for Ovulation which i think will be in a week - usually on CD14 for me. Having Intralipids this thursday :)

@Jecca88 its traumatising isn’t it :( it completely takes away any excitement when you see a positive test too doesn't it as it’s just over shadowed with anxiety. Oh yes hundred percent we have to remain positive for sure! How long have you been on this journey for ? I’m 35 in January so just really want it to all fall into place soon for us. Ahh no I wasn’t given the hydroxyl I wonder why that is ?? What are you on that for ? Xx

@Meg310532 funnily enough i just found my box of all my positive tests and ovulation kits - there were 100's in there - and just decided to chuck them out and try and look forward. I just turned 36 - and been trying to concieve since October 2021 - with various breaks (Few months) in between after waitng on testing. Dr S always said the Hydroxy was needed as I had a later loss (12 week one)- but also he didn't want to put me on pred - so maybe opted for that instead. Randomly just checked my notes and also not got immunity from TB - and i have defo had my BCG jab as i have a huge scar on my arm from it.

@Jecca88 i have everything crossed for you this month that up get your Christmas miracle hun !! Do you have to travel far to the clinic ?? I’m hoping my work will be okay with all my appointments I will have to have xxx

Thanks @Meg310532, that means a lot! keeping everything crossed. we are so lucky - we only live about 40 mins away. My work has generally been ok - I have been there 7 years now.
How about you?

Hi @VenusStarr I am just coming along to this thread. I'm 35 and been TTC 18 months, in that time I've been pregnant 5 times, all ending in chemical pregnancies except one that was a 7 week loss.

Standard hospital bloods like clotting are all normal. I've had a 3D transvaginal ultrasound scan that is normal. Lining is normal. Progesterone and AMH are normal. Thyroid is normal etc. My husband just had a DNA fragmentation test and awaiting results.

I'm now under Dr Shehata via the NHS to check NK cells. I can buy into this since I have various inflammation driven diseases (Crohn's disease, asthma and psoriasis). I already take a low dose immune suppressant and have done since 2016 for my Crohn's.

My original consultant thinks bad luck in terms of wrong egg/wrong sperm each time. Dr Shehata thinks immune system. My next appointment with him is not until February where I will hear the NK cells test results.

@Jecca88 ahh that’s so good you are nice and close, we are 2 hours in rush hour and a hour and half not in rush hour so it could deff be worse ! I’m just so excited to start it all and be under Dr Shehatas care , deff takes some of the guess work out of it all doesn’t it xxxx

Hello @recurrentmis so sorry to hear about your struggles. Hopefully you find a little bit of comfort here knowing you aren’t alone. I definitely do as it’s such a lonely place to be on the fertility world. That’s really good that NHS have referred you as it’s such an expensive process paying privately, I spent £3,300 on just the initial tests. Hopefully they find some answers for you, with Christmas coming up and stuff the time will pass hopefully nice and quick for you and you can get your results. Is that for the results in feb? Or is it for the testing in feb? X

Hi @Meg310532 thank you so much for your message. Have you found any resolutions through this pathway of testing?
So I already did the blood tests and so I think the Feb appointment is for my results. Do you know how long results take? If you think they could be back before then I will contact the secretary to let me know of any cancellations to get in sooner.

@recurrentmis yes you should definitely get them sooner - I'm sure mine came back in under a month

@recurrentmis yes they will deff come back sooner, I think it’s prob a longer wait for the appointment as it’s NHS. They have the results in 3 weeks privately. You can ask to have the results emailed to you though I’m sure? They found that I had normal NK cell count however when they tested the cells in a pregnancy state they found the cells went into high activation so they should be below 20 percent but mine were at 26 percent this is the only thing they found. They said prednisone and infusions should bring them down to 15 percent x

Oh wow @Meg310532 and where are you up to in your journey now? Have you managed to get pregnant and try the treatment?

yes - thats not too bad @Meg310532 - I still feel like I am doing some guess work :( and I still get conflicting opinions - everyone on the NHS says its all down to luck and we have just had a bad case of it.

welcome @recurrentmis - sorry to see you here - but also know you're not alone. I too got a referral for Dr Shehata on the NHS but was so inpatient and couldn't wait the 9 months to be seen. I know that the testing is the same and he also does the Hydroxy and Pred on NHS but he won't do the intrlaipids - thats only for private patient and I was actually seen by him on NHS after i started pirvate care but he said i couldn't mix them - so decided to stay private. Hopefully you can get your results a bit sooner and there is a cancellation. Interesting to see your Husbands DNA Frag test - my husbands came back normal - its good to rule it out. Did you get that on NHS?

@VenusStarr how are you getting on? Have you made a decision if you're going ahead with tomorrow or friday? thinking of you xx

Thank you for your message @Jecca88 as I've already started the process with Dr Shehata on the NHS and bloods been drawn, I will stay on that for now and see. I don't know about intralipids. What are these and do you feel they are integral?
I got the DNA fragmentation test done privately so yes will be interested to see if it shows anything!

@recurrentmis defo stay on NHS - as it saves a lot of money - i just wish i could have been more patient.

TBH i have always been sceptical of the intralipids - they are £380 a pop and its done by a intravenous drip - takes over an hour and its synthetic fat emulsion of soybean oil, glycerin, egg phospholipids, glycerol, and water. Its supposed to suppress your immune response. But also the pills he prescribes helps.
Fingers crossed you get some answers :)

Thanks @Jecca88 where are you up to in the process?

@recurrentmis i got my treatment plan a week ago but I can’t start until my next cycle in December as my husband is away this cycle :( but I am excited to start in December.

@Jecca88 what do you feel you are still having to guess with the clinic hun?? I felt like that with my old clinic Bourne, I was with them from last November till June and just felt I was still googling like mad and looking into everything. I decided with Dr Shehata I would try to put more trust in him and try and stay off Google as it sends me insane haha xx

Hi @recurrentmis I'm glad you found us. I hope the wait for your results is ok and goes quickly for you. You might be able to get a cancellation 🙏 hopefully the costs will be manageable under the NHS, I get my bloods via my GP but everything else is a cost to us.

@Meg310532 I hope November goes quickly so you can start the plan soon 🙂

@Jecca88 thanks for checking in. I'm going for transfer tomorrow, I don't want to have the anxiety and uncertainty of waiting till Friday and the risk of having nothing to transfer at all. That feels like the right decision. Last time we had one that was early blast on day 5 so they watched it and it arrested overnight which was awful. I've read that being in the uterus rather than a lab cam be better and I'd like to have one last chance to be pregnant. If I wait til Friday, I might not get the opportunity.
How are you?

@Gizmo1983 how's things? Do you have your stitch appointment this week? Xx

@Meg310532 I am not sure if its guessing - just more who do i trust. I think it also depends on where I am in my cycle - before ovulation im positive and want to believe that it will happen and then the tww is full of doubt. I think because i have had two miscarriages since starting on the protocol - even though i can explain them in one way of another - it still makes you doubt it. Talking to NHS doctors - they just say keep trying. I think you really have to advocate for yourself in fertility- if you know what I mean. I had to push for a scan with CRP as periods hadn't returned properly from the Miscarriage in June and they had never actually done a routine scan me at CRP - and that' when they found polycystic ovaries and could have caused the blighted ovum - i think if i was scanned a year ago - i could have been on the treatment to help with PCO and maybe the 5th MC could have been prevented. But thats not proven.

Its just a horrible, lonely journey and just full of doubt. But ultimately I know it can happen - his clinic has a 80% success rate :) so I have faith.

@VenusStarr sounds like a plan and makes total sense. I feel like the embryos would rather be in your nice warm uterus too :) How many are you going to transfer?