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

[Tee4me]

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 🤞🏻🤞🏻🤞🏻

Thank you @harrietm87 ! How are you?!

Has anyone taken Ubiquinol? What would be the recommended daily intake?

I have returned for results today and most were normal except for a higher reading for the aggressiveness of the CD16 NK cells. I’ve been put on the High plan which involves the pred steroids from ovulation and intralipids if pregnant.
I’m still not sure what to make of it but I guess we will give it a go. Always keen to hear of people’s experiences.

@DaniMERL hi there! That's exactly the same as what I was diagnosed with-we are starting TTC from this month- fw commences in about a week!
Good luck - keep me posted on how it goes for you!

Hi all, just wanted to say our little miracle baby Noah Nicholas was born in June, he’s just perfect and we’re over the moon! Dr Shehata’s treatment plan made it happen, so don’t lose hope!
Best of luck to you all xxx

@zarala that’s great to know. You’ll have to keep me posted. We will also start next cycle (around 11 Aug). Has it taken you a long time to conceive previously? I’d love to hear your progress.

@adrya many congrats! Wonderful news. Do you mind me asking if you had any losses whilst under the plan and how long it took you to fall pregnant?

Btw, does Dr Shehata offer advice on when/how often to try during fertile window (every day, every other day...) I forgot to ask.

@DaniMERL I've always managed to conceive immediately for all my pregnancies - so hoping it won't take long under the plan- Fx!!!
I didn't ask dr s about his advice- he just said if we don't conceive after 3 months to come back

@Adrya congratulations!!!!!! Wonderful news!!! Love hearing positive stories xxx

Thank you ladies!
@DaniMERL I never had a loss on treatment, we fell pregnant as I was starting the treatment (I decided not to wait for 3 months as advised, but that was just me) and it was successful. Had 4 losses before that, no previous children. It was always super easy for us to get pregnant, they were just not sticking, had tests and we were both very healthy. I was diagnosed with aggressive NK cells and sticky blood, I saw Dr Shehata through NHS and my treatment didn’t have intralipids but had everything else he offers through his private clinic (steroids, aspiring, fragmin, vit D, progesterone)
I hope you’re going to have a success story to share soon x

Hi all, i was not very active on this forum. just recovering from my 7th miscarriage :-( I was on Dr.S's plan (pred, aspirin, clexane, intralipids) after testing slightly high of the NK cells functionality for my recent pregnancy, but again ended up in miscarriage. I ve heard that he puts us on hydroxychloroquine if we failed with pred and intralipids. Has anyone had this and had a positive result? And is there anything else he prescribes? Just want to know before i decide on continuing this process, I m 36 now and and dont have any hope to try again..
Sorry mine was not a very positive story..
Good luck for all the ladies who re trying, hope it gives a successful result.

@hopeful07 I’m so sorry about your MCs, there are lots of successful stories about hydroxychloroquine. You have to be on it for 6 weeks before you can try again. Mr S put me strait on HCQ because of my history and we are going to ttc next month. Don’t give up you are still young, lots of love xx

@Hopeful07 do you have any children?

@Megan234 thanks for ur kind words. I dont have any children, ttc for the past 7 years without any luck. Can I ask why you were on hydroxychloroquine? Is it anything to do with tnf alpha or mthfr?
I m not sure whether he ll put me on it or change anything as all the tests done with him came out normal..Even the NK cells count were normal, only the functionality were slightly high, so he had put me on pred..
Good luck to u..

@hopeful07 I had 1 missed MC this year and 2 CP, also MC at 14 weeks but long time ago. I think because of the late MC he put me on HCQ. I have high NK cells and borderline aggressive, also mthfr gene mutation and I’m taking 5mg of folic acid, but apparently folate is even better.
Have you tried Ubiquinol apparently it can improve egg quality? Also I’m doing acupuncture.
One of my friends had a baby at 45, after failed ivf she went to see this lady who does Bio-Energetic Stress Testing and she got pregnant naturally at 45. Now I’m going to see her I might as well try everything.
Ask me any questions you want, please don’t give up I know how hard it is. Do you live far away from Epsom? Xx

@Megan234 Sorry for ur losses. i hav never got till 12 weeks, mine were all around 7 - 8 weeks. We had a chromosomal abnormality in one of the pregnancies, so had to go for IVF with PGS (genetic testing of embryos) and this time had a normal embryo put in..
Have never tried ubiquinol as my last 3 pregnancies were ivf ones.
I live in the midlands, had tests with Prof Quenby in coventry, everything came out normal so they didnt prescribe me steroids.Then moved on to Mr.S and was very hopeful that it ll work out this time around as i covered both immunes and the genetic testing..

very positive story about ur friend, is the Bio-Energetic Stress Testing based at london?

@Hopeful07 so sorry you’ve been thought so much. The Bio-Energetic Stress Testing is in Kent. I never had any of my pregnancies tested for chromosomal abnormalities how did you arrange this?
I think you should try again with HCQ, one lady had 12 MCs and Mr S gave her HCQ and she had a successful pregnancy Xx

We got it tested thro the NHS early pregnancy unit only, they ll send the pregnancy tissue to the lab for cytogenetic testing if u ve had more than 3 miscarriages..But u need to insist them sometimes..
Ah 12 MCs cant imagine how hard it would have been for her..gives me some hope though to try again. Hope i ll be given HCQ too, hav my review appointment next month..

@hopeful07 how are you?

@Megan234 i m good now, thanks.. had to go to EPU again after having severe stomach cramps and was prescribed antibiotics..maybe some infection after the ERPC..
Saw Mr.S on monday and he has put me on hydroxychloroquine. No much explanation on what had caused the M/C after being on his complex NK cell protocol. He just says i fall in the 15% category where people fail with his NK protocol. And if i fail even with this, he ll put me on G-CSF it seems, more expensive drug. And when i start my next FET cycle, he wants me to have intralipids and scans with him only and not locally here as he says they have done some mixing with saline (after seeing my intralipid reports) but its not done so in his clinic it seems.. I m so worried now how its going to work out travel wise..

How r u getting on?

@Hopeful07 I’m glad you are better, make sure you take Hydroxychloroquine after food I take mine lunch time, it might make you feel a little be sick but when your body gets use to the drug you will be fine. It’s a long way for you to get to Epsom, I’m only 35 mins drive.
I’ve been for a scan this morning and all looks fine. We want ttc this month🤞

@Megan234 whats the scan for? Fx everything falls in place for u this month.
Yes its a very long drive for me thats the reason we had everything here locally, my consultant prescribed me all the meds Mr.S gave. But now he s not very much happy with it and wants us to do everything in his clinic.

About hydroxy, do u have any specific symptoms? And yes, he did mention to take it around lunch time and omeprazole/pred in the morning. Looks like omeprazole and hydroxy reacts so not both at the same time..

@hopeful07 Just general scan to make sure that everything looks ok down there, Mrs S suggested it but I had it done on NHS at the Epsom hospital.
It’s interesting that you are on steroids as well I’m only on HCQ and no I haven’t had any other symptoms I feel absolutely fine on them

@Megan234 thats great NHS does this scan for u..
No i will be on both steroids and hCQ only when i start my FET cycle. So he asked me to take care not to have both of it together. As of now only hCQ (6 weeks before starting FET and then have to continue till 10 weeks if pregnant)

Hi ladies
I have a question for those of you who take/took pred due to aggressive nk cells

This is my second month taking it and first time temping
Last month I did temp but didn't take pred

I am concerned because my post ovulation temps are barely above the cover line. I am dpo5 today and temps have stayed on the cover line.

Has anyone had any similar bbt experience while on pred?

Thanks

@Drttc Please could you tell me where did you use to buy folate from and what would be the daily recommend intake? Thank you

@megan234 I would buy it off Amazon and took whatever the recommendation was on the bottle!

Solgar - Folate (Metafolin)800 Mcg, 100 tablets www.amazon.co.uk/dp/B001LR2RVQ/ref=cm_sw_r_cp_api_uUuCBb6AFKA7G?tag=mumsnetforum-21