Immune/NK cells pred thread #33

[Jecca88]

Hey Guys, starting a new thread as we have run out of space - hope i have included everyone and sending lots of love x

@venusStarr
@Gizmo1983
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@SWMum9 im so sorry to hear about your dog it’s absolutely heart breaking they really are family. After my 15 week loss i couldn’t get pregnant again have no idea why I gave it a year then went to IVF sadly I lost her at 10 weeks for no known reason and then fell naturally pregnant again from my left side which was blocked when they did the hysteroscopy so just shows you just never know what the hell is going on in there.
I get my intralipids privately through cherish I still have no idea if I believe in them or not I drive 3 hours for a half hour infusion which I hate 🤦‍♀️.
@Jecca88 phew so looks like the sertraline will be ok if needed thanks for telling me. I had my midwife booking appt yesterday which I was absolutely dreading and true to form I get a phone call an hours before the appointment to get me to fill in that badger note thing so they give me a log on password I log in and no word of a lie pops up ‘we are sorry that your baby has died’ honestly I was bloody livid and hadn’t calmed down by the time I got to the appt even weirder was that entry was done jan 2025 so was totally random. I wouldn’t let her take my pulse or bp as I knew it would be high.
with nova I just told the dr I’d been tested with CRP for nk cells and come up as high that was literally it there is no scan appts or anything like that like if I had bleeding or anything I don’t think they could help it’s mainly to get the meds xxx

@Deerdancer34 - thank you, that’s exactly it - you just want them to help make one tiny part of the journey smooth! I always see different doctors at my GP, but have since spoken to a receptionist who seemed sympathetic, they are reviewing it with my named GP so fingers crossed they make an exception! That’s so frustrating about the steroids. I’ve had similar things with conflicting information and crossed wires - my GP made a fuss about prescribing progesterone for me when I couldn’t get hold of the RMC clinic. They did it in the end but claimed they couldn’t see it in my notes (I had a letter saying I was prescribed it, but the letters didn’t always reach the GP, and if they did they came very late) and also said progesterone didn’t really work anyway :/

@Jecca88 - thank you, I had 2 rounds of Adalimumab, and then am on 20mg prednisolone, 400mg progesterone, 75mg aspirin, intralipids. With the RMC I was on fragmin, 10mg prednisolone, 400mg progesterone, 75 mg aspirin. I think high cytokines are my main issue, my nk cells were borderline high. RMC nurses have mentioned my thyroid levels being high in the past, but I don’t take anything for that. What is hydroxy for? I wonder if I’ll be put on that next.

@Objectiontime thinking of you today xx

I am on hydroxychloroquine, prednisolone and progesterone for the last 3 months

@Jecca88 oh and I forgot i asked about counselling and she wasn’t sure if i met the criteria 😂😂😂😂😂😂😂😂😂😂

Thanks for the info @Gizmo1983 - i will consider this after these next few months and potentially this IVF round. As currently paying £250 per consultation and £500 plus a month on the pre-ovulation intralipids. Do they prescribe also without having 'wellbeing bloods'? I cannot believe you don't fit the criteria for counselling? ARE THEY MAD. Is there any in your area where you can self refer? have a look at NHS talking therapies? sometimes there is a wait list - i got mind after a couple of months.

@MC8 Hydroxy is also a Immune Suppressant and he said to be to prevent a later loss. Apparently I have to take it to 40 weeks once pregnant.

@Objectiontime hoping everything went ok and thinking of you :)

It's difficult isnt it. I think we all just go for whatever we are offered and Hooe for the best. I cant have intralipids because I'm allergic to them so although they would have been part of my protocol I had to stick with just the pred, cyclogest and aspirin.

Thank you, putting in a general post on how it went below x

Hi all, thank you for your thoughts and best wishes for today. The scan was a tearful experience for good reasons for a change. Saw our first ever cardiac activity and couldn't believe it! Never felt so anxious in my life as I did before that scan. May have another in a couple of weeks and praying things stay good but this is the farthest we have ever got and we are very grateful for that.

@Objectiontime that is bloody wonderful news I’m so happy for you. Just absolutely wonderful ❤️❤️❤️

Just catching up - been manic at work

@SWMum9 I'm so sorry about your dog, it is absolutely heart-breaking and I'm sending you a big hug.

@MC8 I have had some success with GP doing stuff by either having a letter from Recurrent MC or Fertility requesting tests. Some I have had to do privately though - like their rule about testing thyroid 3 months apart etc. Have you had any luck getting them to do it?

@Jecca88 we aren't sure location wise, quite want to do something a bit mad like safari etc but feeling a bit in limbo with transfer dates etc. How's your IVF timeline looking?

@Gizmo1983 so brave of you to reach out for MH support. I went to the GP for something else related to a miscarriage a while ago and the conversation moved onto MH relating to it, he asked me if I'd been suicidal and I (accidentally really) nonchalantly said yes frequently (this was at a very very dark time) and he looked like he'd seen a ghost and instantly prescribed me Sertraline. I never ended up taking it as we were due to start IVF and I was worried about the hormones and mood etc so didn't want to add yet another thing into the mix. Its generally very safe though and I have lots of friends on it who said its been life changing, not sure about the mixing with Hydroxy but I'd ask your Dr. Its an absolute joke re the counselling comment. I've had talking therapy with the same therapist for about 3 years now, she's been there through the start of TTC and all my losses, really recommend it.

@Objectiontime I'm so happy for you and your scan, that is amazing and gives me hope too. How many weeks are you now? Sending you so much luck and sticky vibes, to you too @Gizmo1983 .

Sending love to all!

We had some positive news (yay) from our PGT-A testing that 3 of our 4 embryos are genetically normal. I thought we'd be lucky to get 1 or 2 normal so I'm over the moon with 3 :-) it means I can start to think about a transfer as an actual thing now. Exciting.

@Hopeandfaith1990 this is absolutely fantastic news omg what a result. Omg you are another massive step closer wooooohoooooooo so blooody chuffed for you xxx

@Objectiontime what great news, i can soo imagine the anxiety before that scan and so glad you got that positive news, there is nothing like hearing the heartbeat for the first time :).

@Hopeandfaith1990 omg what a great result. SOOO happy for you. For us - Had a few calls on the IVF front, the Dr at Kings seems a bit useless tbh and just feels she wants to get us off the phone. It feels like we will start begginng of august, if i am not pregnant tomorrow (testing 10DPO). Shall I test now?
She said my AMH and Follicle count was quite low at first scan - which i was not expecting and she said we may not even get any embryos to send for PGTA testing - to try and set our expectations :( but i had a scan a month ago and it say i had 12 Follicles on right and 6 on left and thats without stimulation. Not sure if thats good - but google says its average.
Going to book a holiday to Cornwall and get away for a bit. Everything is feeling a bit overwhelming and all my mates are doing my head in lols. The Steroids this time have also given me a bit of rage and make me angry.

Safari sounds lovely.

@Jecca88 maybe you should test now good luck comes in 3’s and we’ve had our 2 other amazing g bits of news in the last 12 hours. If it is t positive you have an excellent back up plan that isn’t far away from starting that’s the way I always look at it ( or try ) xxx

@Jecca88 i think going away on holiday no matter where it was as long as I wasn’t in my house made such a difference to me after the last MC. It after Florida which gave me the total escapism I think I needed when we got back we just went away every weekend and I loved it I think it’s just out of sight out of mind.
@Hopeandfaith1990 a safari sounds amazing I’ve never done one of those xxx

@Gizmo1983 thanks my love!! I think I'm too worried about being so far away from a hospital to do a Safari this year, we will probs end up in my in-law's place in Spain which is lovely (although I've MC'd there twice but can't blame Spain for that lol). Especially if I'm starting transfer meds.

@Jecca88 thank you!! Do test tomorrow at 10DPO but also try not to rule yourself out if its negative haha as its just so depressing. I've always got my positives 12-13DPO but if negative at 10DPO I'd still be so upset even though I'd rationally know usually I'm positive 12-13. What is your AMH? Your follicle count sounds similar to mine - on stims I had 21 follicles so 18 without stims sounds great to me?! I'm a bit ragey too, another friend announced yesterday, she did it so sensitively to me but I still cried lol.

Hey Love @Hopeandfaith1990 oh my love sorry about announcement, even if sensitive it still stabs to the heart. I just got invited to mate's baby shower, the one who is due a few of weeks after my loss of 'Olive' in Jan. The baby shower is on my due date and i just politely declined and said it would be too much for me. Where in Spain is it? Yeh it does feel hard doing the same thing - i went to my favourite indian restaurant the night before my 2nd loss and i sometimes blame the indian food i had. are you allowed to do a transfer on the next cycle? or do they usually make you wait? Thanks for the reassurance on the follicle count. AMH was 9.6 in July 2023, and is now 4.4 :(

Just did a test and its negative - but then realised i am only 8DPO today. Will try again on Saturday - but you're right @Gizmo1983 i have the IVF as back up.

lol @Jecca88 its good u got the day wrong shows you are not uber focused on it. Don’t blame you for not going to the baby shower
@Hopeandfaith1990 I’m sorry sweet it just cuts doesn’t it. lol my in laws have an apartment in Spain we like to pinch as well we should really go there more often.
im back in the mid wife’s office waiting room ffs my blood test failed so they want another one I fucking hate it here last place I want to be.

@Jecca88 I think you're right, baby showers are way too hard. I used to make myself feel bad by thinking of that SATC episode where Charlotte goes to Miranda's babyshower but then I realised she had one MC and I'm sadly much more seasoned than that lol.

Their place is near Valencia / Denia and its really chilled and relaxing. I think we should go, I just feel so scared of doing anything that could potentially affect a transfer lol.

Will hopefully do a transfer this cycle, I didn't get OHSS so I'm hoping the Dr will let me. Sorry your AMH has dropped, in the IVF chat I'm in I've seen people with much lower AMH have success so whilst a drop is annoying it definitely doesn't mean its game over like it seemed your Dr said. Also AMH is just quantity of eggs isn't it, it doesn't measure quality so you just need a few good ones. As my acupuncturist said to me 'you don't want 21 children do you' when I was lamenting my 21 down to 7 and then 4. I've never got anywhere near a positive on 8DPO so you're deffo not out yet my love. I have to admit I think I agree with Giz that despite all the waiting I have genuinely found IVF easier than TTC. Sounds mad doesn't it, but after 2.5 years I think its just a relief.

@Gizmo1983 oh no I'm sorry, do they mean it was inconclusive? Hopefully you can be out of there ASAP. I find blood tests so bloody triggering and my veins are useless so they're always a bit traumatic. Holding you hand.

Thanks my loves @Gizmo1983 and @Hopeandfaith1990 you guys are giving me lots of hope :)

Gotta try and stay positive. I so remember that episode on SATC. I wish they had more representation in films or shows about the relationship breakdowns of friendships in the fertility world - they tend to just show baby loss as something that isn't all consuming - and i rarely see if effect the friendships etc.

@Gizmo1983 i am sorry you're back there - is this for the NIPT bloods?

@Hopeandfaith1990 Valencia sounds lovely, even if for that 2WW to try and distract. Maybe i need to start joining IVF groups and forums.

I am looking forward to it, but also so scared we won't get anything now.

I agree - representation is really needed. Its always just the woman on her own suffering and rarely focusses on it outside of her experience. Obvs that's necessary but I'd have felt less alone in how my friendships were struggling if I'd seen something represent that.

This is the IVF thread I've been on if you fancy it - it was for June but I'm still posting on it and will transfer in July so I think its fine. I might also search for a July one

https://www.mumsnet.com/talk/infertility/5321694-ivf-icsi-june-2025

@Objectiontime that's really brilliant news, I'm so happy for you!
@Hopeandfaith1990 excellent news on the testing - amazing result! I haven't had any luck yet... GP was meant to review it and get back to me yesterday, but of course they haven't! I did contact RMC as well to ask if they can refer, but they haven't replied to my email so I might have to chase on the phone... it's all so draining I'm kind of thinking to just give up and pay and be done with it! Lol. Spain sounds lovely and relaxing, probably what you need after transfer!
@Jecca88 my AMH was much lower when it was tested before IVF too and our consultant was also unsure we would get anything - in the end I got 15 eggs and 5 embryos, they were v surprised. I think your numbers sound good but I guess I understand why they try and manage expectations.
@Gizmo1983 so sorry :( That's super frustrating, hope you are out soon.

@Hopeandfaith1990 she spelled my name wrong on the tube 🤦‍♀️.
@Jecca88 my amh dropped so much in the last year but I’m going to be 42 next week 😢😢😢 even though on scans I always had a very varied follicle count don’t let it weigh on you too much, you can always egg bank so do 3 collections in a row that’s what they suggested to me but i just went for one at 1st to see how it went I only got 4 but got one egg out of that pgta tested normal so it was enough. My 2nd collection I got one follicle so it was abandoned at my decision and that’s when I put my one normal one back in. I swear I used to open my most hated cupboard in my ensuite with all my ov tests and preg tests while I was doing ivf and stick my finger up at it and tell it I fucking hated it and never wanted to open it again I know absolutely insane but that’s what I did 🤪🤪🤪. I had the bad side of ivf as well with my 2nd cycle failing it wasn’t great but it was manageable as there’s different drugs to try and things to do.
since no one is sure what my issue is even though I was positive for nk cells my losses were 10 and I 5 weeks that was why I decided my next route was donor eggs. I have a theory that donor eggs will be stronger and more resilient than my 42 year old eggs me and hubby have been genetically tested we are both normal so it’s not that the only thing left is egg quality or something no one can diagnose yet or the NK cells but it was 10 week loss on full immune protocal.
so sorry my point before my ramble was what @Hopeandfaith1990 says in that it gives you a brain break and just a break from all the usual TTC crap that you are just so totally fed up with apologies I went off on a total tangent lol 😜

@Gizmo1983 Thank you 💕

Urgh I'm so sorry. I hope it went okay. The name thing happened to me on the morning of my first MVA, I was absolutely fuming. Its like literally come on you have one job. I had to wait for ages for them to retest my blood and get the results back, just waiting for the MVA to start, was awful.

@Hopeandfaith1990 that must have been awful I can just imagine what waiting around wanting it over was like 😢.
now you have your results can you get a start date from your clinic get the ball rolling xxx