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Immune/NK issues - aka Pred Thread no. 21!

997 replies

Tee4me · 04/09/2017 15:17

Roll call for all moony faces!! 🌝🌝🌝

Waiting for our rainbows 🌈❤️💛💚💙💜

Tee4me
Age: 34
TTC DC#2 since December 2015
x2 MCs (second was 'missed')
DS turns 5 this month 😱
Seeing Dr Shehata - diagnosed with Hypothyroidism and aggressive NK cells
Currently on cycle 2 of Pred and week 6 of Thyroxine
CD10, expecting to ovulate at the end of the week 🤞🏻🤞🏻🤞🏻

OP posts:
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zarala · 17/06/2018 11:41

@PoppyJ1 interesting
But sounds like you're in good hands! I like
Uclh a lot
Lots of luck to you

PoppyJ1 · 17/06/2018 12:42

Thanks Zarala. You too x

Megan234 · 17/06/2018 16:40

@zarala Mr S seems nice but it was very quick appointment, you can tell that he is very busy. I’m going for my results on the 27th June. Did you say to Mr S that you didn’t want the hysteriscopy? Was he ok with it? I’m not sure if I can avoid this cost as my appointment with the RMC in Epsom is not until mid of August.

DoraD · 17/06/2018 19:46

Evening Ladies - I hope you don’t mind me posting in a panic! After 3 early MC, I’m currently on Shehata’s programme of multi-vits incl D3, thyroxine, aspirin & prednisolone & received my BFP yesterday :-) he had advised to test at 10DPO but as we used a final round of clomid from our local fertility clinic with trigger shot - we didn’t test until 15DPO to ensure the ‘real’ HCG was being picked up. I’m hoping it’s not too late to have our initial intralipid infusion (praying he gets us in tomorrow/Tuesday) as I’ve read that he asks to test at 10days to ensure you have the intralipid asap so we’d be a week behind tomorrow. I’m on the predisolone so hoping that is keeping my high NK cells calm in the meantime...but reaching for some reassurance if anyone has any? Thank you X

zarala · 17/06/2018 20:16

@Megan234 well at my first appointment he was quite insistent that I would ideally need a hysteroscopy and he told me when I get my result at the next appointment we could discuss it and I could choose what kind of scan I could have. Well at my follow up appointment he didn't mention it at all- so as I was paying for all my drugs I remembered so I popped back into his office and i asked him about it - and he was like oh yeah I forgot! You should have a hysteroscopy- book one in at the reception- but as my RMC appointment was the following week I decided to just wait and see what they said...and they recommended I have one- so if I don't get pregnant this cycle then I'll be waiting for that before TTC again

@DoraD Congratulations on your BFP! And fx for a happy healthy and easy pregnancy!
I have no idea what dr S policy is on that - maybe call the nurses- I find they're more responsive by phone than email (they can take a while to answer)

My worry is about testing at 10dpo- I don't think I've ever got a positive until after AF is due and I am really worried about false negatives.... has anyone experienced that? What if I think it's negative- stop the pred and then turns out I am? Ah! It's a mind fuck isn't it? So hard to know what to do!
I'm doing to ask the nurses this week and see what they say- I am testing next Saturday! 😬

DoraD · 17/06/2018 20:51

Thank you so much for your reassurance and crossed fingers :-) I’ve always been of the mindset to wait 14 days to test for better accuracy...plus clomid & trigger cycles always advise to test 16 days post trigger to ensure it’s the real thing. I also didn’t want the confusion on whether to come off the pred. I’ll be onto them first thing as I’ve had no luck with the emails either 😴 just hoping they have a slot for me as need to travel up from Wales! In the meantime...I’m trying to reassure myself that this cycle is benefitting from all the meds to keep us going unlike before 🤞🏼🤞🏼🤞🏼 Good luck testing next Saturday... such a painful wait but everything crossed for you X

Adrya · 17/06/2018 21:30

Hi @DoraD and everyone else new on here, I’m one of Dr Shehata’s success stories, waiting for our little one to arrive in one week. Have not been on here for a while, so welcome to all newcomers! Just wanted to let you know I didn’t have any intralipids, just his ordinary protocol of pred, vits, progesterone and Fragmin. I was fortunate enough to see him through NHS as I live in Epsom, and he doesn’t offer intralipids through NHS, and he didn’t give me the option to do it privately (apparently you can’t see him privately if you’re seeing him on NHS). I have also heard from other ladies on this thread and earlier ones that they didn’t believe intralipids helped much - of course I’m not telling anyone not to have them! But they didn’t make a difference for me, I got pregnant on the first try on his protocol and it was successful so praying my little one gets here healthy!
Wishing all of you the best of luck, you are definitely in the right hands with Dr S, as he’s had countless success stories!

zarala · 17/06/2018 21:44

Hi @Adrya
Thanks so much for coming on here and updating us!
And good luck with your upcoming birth!! It's really wonderful to hear success stories from Dr S
It's really interesting about the intralipids- the consultant I saw at the RMC at St Mary's basically laughed at the idea that I would even consider the intralipids- and now after your post I really am considering NOT doing it...
This is my first month TTC on the protocol and I'm so nervous about everything but your post has really made me feel good!
Please keep us posted with your birth!

DoraD · 17/06/2018 22:09

Hi @Adrya so lovely hearing stories like yours...& how exciting only a week to go; wishing you a safe birth. I’ve always been very skeptical about the intralipids to be honest; but at the same time, I’m willing to do everything to give us the best chance & Shehata’s results showed that my risk of misscarying was far less combined with intralipids as opposed to pred alone. Our NHS consultant is against them as they can allow a bad pregnancy with poor dna/chromosomes to go to term that may otherwise have been rejected natuarlly which really put us off but it’s just such a minefield. I already feel so much better being on the thyroxine, metformin & prednisolone. Such a hard decision to make but we’ll probably go ahead with the intralipids; I think he’s recommended 4 in total throughout a pregnancy (gulp 💰💰) X

Megan234 · 17/06/2018 22:11

@zarala thank you for the info, it’s great being able to speak to other women who going through the same 😊
@Adrya thank you for your post you have given us hope, good luck with the birth.
Do you know if you can switch from private to NHS as I have an appointment at Epsom Hospital but not until mid of August?

Adrya · 17/06/2018 22:30

Hi ladies, thank you for your kind thoughts, and so pleased my story has helped- I know the stories I read on here have really helped me when I was at the beginning of this journey! And I’m positive you’ll get your little ones soon, you’re on the right journey!
@Megan234 - I was told you can’t switch from private to NHS, it’s either or, and as I was lucky enough to get an appointment on NHS only 3 weeks after I could get a private appointment, I decided to save myself a few thousand pounds! Just bear in mind that on the NHS you don’t see him personally all the time, sometimes one of doctors in his team see you, but they are amazing, and tbh I found the couple of the ladies dr I saw when he was not around so much more patient than Dr S - he tends to rush you through a bit, as some people on here have said.
I’m not sure whether my scenario is different as I am registered at Epsom Hospital for my pregnancy, but as he’s the Head of Obstetrics here, I found my care by the midwifes and all the antenatal team just amazing - as soon as they see you’re under Dr S care, they look after you very closely!
So I would recommend seeing him on the NHS if you have the opportunity.
Best of luck all, and let me know if you have any questions I could help with
xxx

Megan234 · 23/06/2018 09:34

@Adrya thank you for your help, let us know as soon as you have your baby, good luck.
@Zarala have you done your pregnancy test? I never get positive 10dpo
@DoraD I hope everything went ok with your intralipids appoitment?

zarala · 23/06/2018 11:09

@Megan234 hey! So I tested this morning- I'm either 10/11dpo and it was negative 😐
I have never tested positive before my periods due anyway so I'm still trying to stay hopeful
I spoke to dr S nurse and she said it's ok to stop the pred if you have negative on dpo11- but she said to keep testing if AF doesn't arrive as some women get a positive result later- and then to get back on the pred!
I am hoping that I may have gotten lucky this month- but I am also feeling quite crampy as if AF is imminent- I'm not due until Monday- so I feel like I'm in limbo now!
I'll probably test again tomorrow 🤦🏻‍♀️

Megan234 · 23/06/2018 11:31

@Zarala Definitely test tomorrow fingers crossed🤞 I know pred can effect your cycle for next month and don’t take it longer then 10 days. What test are you using?
I have been feeling a bit funny sore boobs etc and I have tested today as well but it’s negative or it might be too early. I can’t wait for my results on Wednesday. Keep me posted

zarala · 23/06/2018 11:53

Thanks @Megan234 - I will do!

What day are you in your cycle? Fx you just tested early!
And good luck for Wednesday ! I can only imagine how anxious/excites you are for that!

Do you temp at all?
My chart is confusing the hell out of me!

Megan234 · 23/06/2018 12:00

@Zarala I should have may period on Wednesday/Thursday next week, we haven’t really been trying this month, my cycle is all messed up after my last MC. I’ve only tested with a cheap test, I might do the first response test tomorrow as it is much sensitive. What preg test are you using?

zarala · 23/06/2018 12:06

@Megan234 ah! Yeah sounds quite early
I'm due on Monday so let's see...
I'm using a FRER- dr s recommended that one

harrietm87 · 23/06/2018 15:55

Hi @Adrya just popping in to say congrats and so happy that your pregnancy is going so well! Good luck with the birth!

DoraD · 24/06/2018 19:34

@Megan234 oh I do hope you get some positive news this week...still early days to test. I always test at least 14 DPO for my sanity :O the intralipids went well thanks...had them on Wednesday & I’m glad I did, just for peace of mind if nothing else. I will say; it’s very strange/unnerving having no pregnancy symptoms but I’m told the prednisolone can mask them so I’m keeping myself occupied & in that frame of mind for time being...

zarala · 24/06/2018 20:36

@DoraD glad the intralipids went well! Fx this pregnancy is a happy healthy one!
How long have you been TTC on the DR S protocol?

Sadly I don't think I am pregnant this month- not really surprising as we didn't manage to DTD for 3 days once I reached peak fertility on the opks (our DD was not well and she interrupted our most crucial sessions! 🤦🏻‍♀️😂)
Oh well!
I'm going to have to wait until August now as I'm away from OH during FW in July
Ah! I am so impatient already!

@Megan234 any luck with the FRER?
Good luck for your appointment on Wednesday! Please keep me posted!

Megan234 · 24/06/2018 20:47

@Zarala don’t worry August will come quick. I decided to wait until tomorrow to test with FRER as it is still early Xx

Megan234 · 25/06/2018 20:19

I'm pregnant😊 we didn't plan to get pregnant this month but it happened. I'm happy and scared as I don't want to have another MC. I've spoken to Mr S clinic today and as I'm seeing him on Wednesday he will give me whatever medication I need. Not a lot I can do now just pray and hope that everything will be ok.

zarala · 25/06/2018 21:06

Wow @Megan234 congratulations !!!!!

And good luck! Really hope it's a happy healthy pregnancy for you!!!!

I'm still waiting for AF over here- secretly hoping I am also pregnant but don't think I am!

Megan234 · 25/06/2018 22:15

@Zarala thank you, I hope it’s not too long for your BFP Xx

DoraD · 26/06/2018 06:56

@megan234 congratulations...lovely news! @zarala this was our first try on Dr S treatment... our initial consultation was in March & we wanted to ensure all relevant meds had kicked in before we tried again. It still feels too good to be true & still mentally struggling with lack of symptoms but trusting the prednisolone is working it’s magic FX! I hope you get your BFP very soon :-)

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