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Immune/NK cells pred thread #33

1000 replies

Jecca88 · 11/12/2024 12:18

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
@Carportforme
@Meg310532
@Newbeginnings22023
@recurrentmis
@hopefulH
@v60
@lozzmax
@fleur89
@motherofshihtzus
@sunflower360
@kea1990
@sprinkleofbabydust
@star2022
@rumandspinach
@ems123456789
@rainbowsunshine81
@mamaw05
@thornters
@elarcoiris

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11
Hopeandfaith1990 · 01/04/2025 16:43

Meg310532 · 01/04/2025 16:37

@Hopeandfaith1990 you have been given majority of the meds that you need from NHS hun !! to be honest the only extra thing you would benefit from is the letrozole purely to get more eggs to speed things up. However the pred and the steriods all get sooo expensive with CRP and they also make you come in for regular scans and infusions and dont really give you the choice. Which is then frustrating isnt it as you are getting all the meds for free on the NHS. hmmm.... ! its such a bloody tricky one! How would the NHS know that you are doing the superovulation with CRP clinic????... do you want to do the letrozole purely to speed up the geting pregnant part? when was the last time you were pregnant? are you ovulating okay by yourself ? x

Exactly that!! I want to stay on the NHS prescriptions but pay for the superovulation. I don’t know why they have to cancel each other out ?!? Ha.

yes, I just want to be pregnant now. I feel (mostly) confident with the medical protocol and I want to give it a ‘proper’ go as with my last MC I’d only started the protocol that month so I don’t know if it was as effective. I last fell pregnant in July 2024 and lost it in the September. No success since then - had 7 cycles since when I’ve ovulated and everything seems fine medically (only got one tube though which could be slowing it down)

would Dr S let me take my own meds re the pred / hydroxy etc? Xx

Meg310532 · 01/04/2025 16:46

i think he would @Hopeandfaith1990 as he will give you a private prescription to get it elsewhere if you want to. I also had loads of progesterone left over from other cycles so said that I didnt need progesterone and they didnt query it. I think you should see about doing the superovulation without the NHS knowing?.... i dont know how they would know??? lol xxx

Hopeandfaith1990 · 01/04/2025 16:51

@Meg310532 i agree!! Thank you for answering all my questions it’s so helpful xx

Meg310532 · 01/04/2025 16:56

@Hopeandfaith1990 good luck with it all hun !! xxx

Notsure31 · 01/04/2025 19:38

@Hopeandfaith1990 was the semen microbiombe test from a clinic? I’ve been looking into the microbiombe tests that you can order online, but never been sure if it’s worth it as I already take probiotics to rectify any issues which might be going on with me. With the male one I’d worry that the semen quality would naturally reduce in transit if we needed to send it off so would make the results invalid anyway.

Hopeandfaith1990 · 01/04/2025 19:45

Notsure31 · 01/04/2025 19:38

@Hopeandfaith1990 was the semen microbiombe test from a clinic? I’ve been looking into the microbiombe tests that you can order online, but never been sure if it’s worth it as I already take probiotics to rectify any issues which might be going on with me. With the male one I’d worry that the semen quality would naturally reduce in transit if we needed to send it off so would make the results invalid anyway.

Yes, done in person at fertility solutions in Beaconsfield. Clare Mooney is very knowledgable and it’s one of the clinics jonothan Ramsey works out of

Jecca88 · 02/04/2025 11:25

oh @Hopeandfaith1990 i am sorry :( its exhausting isn't it, we have had a forced break (mainly down to retained products after MC) but now we can try again, i am taking this april off just to feel myself again. Who is your NHS treatment with? what Hospital?

@Notsure31 - have you been NHS referred to Epsom with DR Shahata? have they told you how long the wait is, where you are on the list? I got referred to his NHS clinic, but then couldn't wait and went to his private one, but it was only 5 months later the referal first appointment with NHS invited me - they do all the same tests and prescribe pred, hydrox and progesterone - they dont do intrlaipids with the NHS and i couldn't add that on privately, so you really have to make a choice. Have you had Genetic counselling after they found chromosome issues? was it the same genetic issue they found?

Hey @Meg310532 - yes all good - i barely notice the Hydroxy tbh. I am feeling so dumpy atm and not ideal 2 weeks before i am supposed to be on holiday in a bikini, i barely recognise my own body. I just can't muster up the energy to start exercising. On a positive note, we bought a Magnolia tree three years ago after our first loss, whom we name 'maggie' and the tree is also referred to as Maggie and she has bloomed this year and the flowers are beautiful and it makes me so happy to see it. Longer days of sunshine are helping too. How are you Meg? you must have a bump by now?

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Meg310532 · 02/04/2025 15:07

@Jecca88 I have totally lost the bug for the gym, im just enjoying walks. I actually cancelled my gym membership as was paying £125 a month and going like once or twice, especially now with the weather getting nicer I prefer to get outside and do a few 5k walks a day over going into a stuffy gym! awww thats so cute about the tree what a beautiful idea!!!! So good that you arent having any side effects of the hydroxy! I have got a little bump coming on now or just a bit of podge/bloating im not too sure haha!! I have another scan on Friday at CRP and infusion xx

Jecca88 · 02/04/2025 16:30

@Meg310532 omg that month has happened so quickly, so it will be the 16 week intralipid and Scan? how are you feeling about it?

Yes actually been loving the walks and listening to podcasts. I listen to TWGGE - i couldn't listen to it when i was pregnant so wouldn't advise now but it really is emotional and normally end up in tears behind my sunglasses.

Also - we got a parental karyotyping results in the trisomy 21 - all came back clear. Which i suppose is good news - but just stab to the heart to prove that our 6th miscarriage was random and 'bad luck'. I have also got a referral for Kings fertility through NHS and they said they should be in touch with me in 2-4 weeks.

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Notsure31 · 02/04/2025 16:32

@Jecca88 they said about 8 months, did you end up going through his nhs clinic in the end? Yes we have been referred to genetics, but the two pregnancies confirmed as chromosome issues were two separate things so who knows what will come of it.

Meg310532 · 02/04/2025 17:05

@Jecca88 its my 16 week scan and infusion yes hun :) although when i had my dating scan with NHS they have dated me like a week behind and said they wont go with CRP dates they have to go with NHS nuchal scan date which is annoying. So i will actually only be 15 weeks 1 day on friday in NHS times.
ahhh thats good about the testing, but yes i can imagine it feels like a cruel stab to the heart again being classed as bad luck as its sooo unfair!!!
oh thats amazing news about the referral, do you think they could fund all the immune side of things? xxx

Jecca88 · 03/04/2025 10:19

@Notsure31 i got invited to appointment from the NHS and i went along - this was 5 months after i had gone through his private clinic and already had the tests and started treatment and already had 1 MC on the treatment. I thought maybe they were putting me through NHS and I could save some cash, but he said you need to decide if you want to stay private or come with NHS but there is limits with NHS. As i had spent all the money already - i just stayed private. Have you had parental karyotyping done? How late were your losses?

@Meg310532 - thats odd that NHS say a different week, is it based on growth or ovulation/period date? So the referral is for the IVF clinic, so i doubt they would do the immune stuff too. So i would hopefully get funding for standard IVF and then i would pay for PGTA testing additional and also the immune protocol. I will still try naturally on the protocol in the meantime and pray for the best.

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Jecca88 · 03/04/2025 10:22

@Meg310532 i have forgotten why you went for super ovulation? Why do you think this pregnancy has worked? This is your first one on the protocol?

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Notsure31 · 03/04/2025 12:51

@Jecca88 my early losses were 4 weeks, 7 weeks and 9 weeks (this one was a blighted ovum which took a long time to diagnose). I had karyotype testing for 3rd one which was a chromosome issue but my balanced translocation testing was clear. The early losses were all with a previous partner. My TFMR was at 16 weeks for a chromosome problem but my current partner hasn’t had any testing so we have been referred back to genetics.
Because I carried to 16 weeks I’m not entirely convinced it’s immune issues for me but I’m still looking into it because of my autoimmune thyroid condition. It all just feels like a minefield!

Meg310532 · 03/04/2025 12:57

@Jecca88 yeh they said its based on the measurement of the baby, i think it was about 4/5 days diff between NHS and CRP but they said its nothing to worry about. That would be amazing if u can get all that funded, you bloody deserve it everything you have been through and everything you have spent so far!! So i have PCOS so my ovulation was very late in the month with long cycles and high AMH which meant some months not ovulating so it was just to have more clarity i was deff ovulating and also speeding things up. Yes hun this is my first pregnancy on the protocol xxx

Jecca88 · 03/04/2025 13:31

I am so sorry to hear what you've been through @Notsure31 and to have no pattern must be so hard to comprehend and going through a TFMR sounds horrendous. Has NHS given you anything for your thyroid issues? Have the NHS spoken about IVF with PGTA testing?

Thanks @Meg310532 i just really want to get there. It does feel like time drags doesn't it. Like i Can't quite belive i have to go through the whole 12 weeks again and then its blood 30 more weeks from then. Ahh fair enough and are you still taking the Inofolic and Metformin? Did they ever put you on Hydroxy?

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Gizmo1983 · 03/04/2025 16:41

@Notsure31 i have a very similar story to you. I had a blighted ovum, then a 15 week loss which was tested and came back genetically clear only thing was a cystic hygoma at 11 weeks but it had gone by 12 weeks, I then got dr shehatas tests, it came I had high killer cells however from all the reading I’ve done natural killer cells don’t affect losses this late. I then had a chemical under shehata then went to ivf got embryos pgta tested got pregnant had all the meds and checks but then lost it at 10 weeks again it was tested and came back clear.
hey @Jecca88 im the same have put a stone on since my last loss I won’t be looking my best on holiday but its too late now so ill just enjoy lol. I’m like you the sun is making me feel a bit better. I’ve never missed an ovulation in 3 years but it was actually my husband who said I was and I was like no it’s not time yet I did a test and I was lol so no stress this month woohoo it’s quite refreshing. Still haven’t decided donor or not.
@Meg310532 you go girl you are almost half way ❤️
lots of love to all

Jecca88 · 04/04/2025 09:58

@Gizmo1983 ahh yeh i am just trying to embrace my new curves :) and enjoy the holiday, we have been through enough right. That does sound refreshing, i haven't tracked at all since Oct last year. I usually use the clearblue ovulation - but its expensive, like 30 quid a month. So thinking of moving to Prenom. What does everyone else use?

OP posts:
Hopeandfaith1990 · 07/04/2025 09:41

Jecca88 · 04/04/2025 09:58

@Gizmo1983 ahh yeh i am just trying to embrace my new curves :) and enjoy the holiday, we have been through enough right. That does sound refreshing, i haven't tracked at all since Oct last year. I usually use the clearblue ovulation - but its expensive, like 30 quid a month. So thinking of moving to Prenom. What does everyone else use?

I use the Ovusense Ovucore monitor for BBT (game changer) and just basic easy at home LH strips. For tracking I use the Ovusense app, Fertility Friend and Flo. Don’t know why I have all 3, could probs get rid of Flo but I think I accidentally got a year subscription 🥲 every time I’ve got pregnant I’ve liked flo for the updates but it’s pretty useless for TTC.

how is everyone doing?

v60 · 07/04/2025 18:25

Sorry guys, I’ve been quiet but keeping up.

@hopeandfaith your question was a while ago but I’ve been taking pred on an empty stomach first thing and it’s been fine for me so far. I’m not a big fan of breakfast generally. A break sounds like it would be a good call. It’s such a long demanding slog, I feel like it’s one hurdle after an other and so lonely on top of that.

@Meg310532 so encouraging to hear of your progress. Hope you’re doing ok.

@Notsure31 I can empathise - I’m thankful I can get pregnant quickly but yet I can’t seem to get past 9 weeks. There’s something call hyperfertility which I keep meaning to ask my consultant about and forgetting, although, I don’t think it would actually make a difference in term of protocol.

@Jecca88 your magnolia tree sounds amazing - does it have a scent? They are so beautiful. Hope Kings comes through soon for you.

@Gizmo1983 hope you’re doing ok these days lovely.

To those of us bemoaning weight gain - yes! I feel like I’ve put a stone on with each miscarriage and it’s not budging. And I have the dreaded moon face.

I am currently 6 and a half weeks. When I wiped this morning the tissue was pink so obviously thought the worst - managed to get a scan and saw a strong heartbeat. I’m not holding my breath, I’ve been here before. Each time we’ve seen the heartbeat and then lost it around 8/9 weeks. I feel like I'm in the danger zone. I’ve got cramps this evening but everything looked very ordinary on the scan a few hours ago so just trying to relax…that infuriating word that has probably given most of us ptsd!

Jecca88 · 08/04/2025 11:54

Oh interesting @Hopeandfaith1990 i only use Flo and the clear blue - maybe i need to get something else.

Hey @v60 ohh bless you such an anxious time, so glad you got to see strong heartbeat but going through what you have been through i know it doesn't provide all the reassurance. How are you feeling today?

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Deerdancer34 · 09/04/2025 17:22

Hello everyone, I was on this a while back when I started my journey at Dr Shehata's, its the most incredibly useful thread isn't it! I was fortunate to welcome my daughter last year after 3 miscarriages and an ectopic. I'm starting to get my head around doing it again in the future and wondered did anyone manage to get their steroids prescribed by the GP? It maddens me that the NHS aren't more helpful now I know what works (hopefully!). Do ask any questions if I can be of any help. Sending everyone so much love, I know how it feels...💞

Meg310532 · 10/04/2025 16:43

@Jecca88 hi hun ! yes still on the metformin, i only took the inofolic a few times i was lazy with that !! so right now im taking, metformin, baby asprin, pregnacare and vitamin D. I have come off the progesterone and also the steroids. My skin has come out with sooo many spots/rash and i think thats from coming off progesterone and i am suffering with the most intense migraines!! ... I wasnt ever put onto Hydroxy no hun ! ... ohh god its so much dread isnt it the first initial weeks its just filled with anxiety!! i honestly think i have only been able to really enjoy/believe its happening recently! xx

Newbeginnings22023 · 11/04/2025 19:20

Hi everyone, hope you’re all ok. I’m back as I’m now doing super ovulation for the first time, just finished the course of letrozole and hoping for the best!

@Meg310532 I’m glad you’re starting to enjoy it and are feeling ok xx

@v60 I hope it all goes smoothly for you xx

@Jecca88 @Gizmo1983 I hope you’re both ok xx

@Deerdancer34 many congratulations on your daughter :) I managed to get pred prescribed by my GP because like you, I’ve had multiple miscarriages. It was during a pregnancy though (which I eventually lost) which may have helped convince them xx

Hopeandfaith1990 · 13/04/2025 15:24

Thanks @v60 I'm going to try it that way this cycle, unless we do have that coveted break! Its almost hard to tell myself we're taking a break than not to be honest. Its incredibly lonely. So many of my friends are currently pregnant or have had babies in the time I've been TTC. It feels like everyone moves on and you're stuck. I hope you're getting on okay xx

@Jecca88 I really like the visuals of Fertility Friend - the way it charts your temps is super clear etc. Quite 90s graphics but good.

@Deerdancer34 Huge congratulations on the birth of your daughter! I have the steroids (Pred not intralipids) via the NHS. Were you under recurrent MC before you had your daughter? You could approach them and ask for them to prescribe it. You clearly have the evidence that it worked. What was your protocol for your successful pregnancy?

@Newbeginnings22023 Hi! If you don't mind, would you mind sharing the steps of superovulation? I am considering trying it next cycle as a final effort before IVF. I've conceived 5 times (all losses) before but its now been a year with nothing and its getting tough. Thank you!

Hope everyone is doing ok xx

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