Immune/NK cells - pred thread 29

[StillTrying10000]

Starting a new thread as the last was full.

Can someone tell me if immune protocols are usually successful and what protocol you were successful in? High Nk, normal Cytokines and low LAD.

Hiya, i thought I'll ask on this thread. I'm on Dr S complex plan, humira, intralipids, prednisolone, asprin and cyclogest. TPO+ (thyroid levels under control) and ANA+ and slightly raised TNFa.
Still very new to the plan. I took the Humira so far. I was wondering if anyone could say when the best time is to take intralipids?

I was told I could come in anytime during a cycle.

Hi @ummidreams are you doing intralipids as preconception? I have them around ovulation, so tend to go anytime up to a week before. I normally just email them, tell them my cycle day and expected ovulation and they book it.

@Conundrum12345 Dr Shehata's succes rates are 80% he doesn't do LADS though. I've not had success yet on the plan.

Hi @Weathere I'm sorry for your losses. I haven't had a molar pregnancy, all my losses have been at the same point. Do you have a doctor in mind who you're thinking of going to? I'm under Dr Shehata.

How are you @Sezmarelda1 ?

@HoldingOn2Hope thank you, I've messaged you. He was a bit miffed that I'd been prescribed sitagliptin from Tommy's. What's your next steps?

I finally got to do my trigger on cd20. I took letrazole and estrogen this time, first scan was awful. I went back on the Friday, cd15 with only one 13.5mm follicle, all that effort and stress! But Dr Edge did a plan for me, so trying to hold onto that. I'm taking gcsf on Thursday, testing on Monday.
I had bad news from my ivf clinic that my tsh has gone up to 3.9! So have doubled my levothyroxine dose. All in, have zero hope for next week. We'll be doing our frozen embryo transfer (last embaby 😞) when my next period comes.

Hope everyone is OK ❤️

I've not had any experience of molar pregnancies either @Weathere .

That all sounds very, very frustrating @VenusStarr ! Did you do another scan between the one on CD15 and doing the trigger on CD20? Don't give up hope, hope is all that keeps us going sometimes!

I'm on CD13 today. I'm really struggling with TTC this cycle, psychologically it's making me feel a whole mix of negative emotions. Perhaps because my most recent MC I didn't bleed for as long as my others, so it's not been that long a gap before we're back in to the stresses of TTC again. Then this morning I bumped into a friend who I've not seen in a while and she had a lovely little belly bump. It was too triggering so I pretended not to notice - great friend I am!!

Oh @Sezmarelda1 don't feel bad ❤️ I found ttc this cycle challenging too. We definitely just went through the motions. I didn't have another scan in between, but I was doing opks and on the day of trigger I'd got a strong line, whereas previous tests were white, not even a faint one. So hoping that means that the follicle did grow. My bbt chart is saying I'm 5dpo, but I'm not sure. My acupuncturist thinks I ovulated the day of the trigger, so really hoping we caught it 😑 very stressful.

Hi everyone. Hoping I can join. We recently saw Dr S again after a long break from trying. We did some IVF cycles in the meantime to embryo bank. I had some repeat bloods with him a couple of weeks ago and just had the results this morning. It looks like my TNFalpha is high and he’ll be prescribing me Humira. Has anyone else been on this?

@VenusStarr yes, I am to do preconception intralipids. I'm a bit nervous to be on so many immunosuppressants tbh. It does seem a lot.
Humira, prednisolone and Intralipids.

Really hoping I get a clear indication of ovulation this cycle to start Prednisolone and progesterone. Currently on CD12. Usually ovulation happens between CD16-20.
Is it about the right time to book the intralipid?

@Ifitistobesaid hi, I've just started humira. Yet to see if helps.

@ummidreams Thanks for responding. Do you mind if I ask how much the Humira was? I've heard it's expensive but it would be helpful to know what ballpark.

Do you have any autoimmune conditions or similar to explain the raised TNF Alpha? I don't as far as I know but now I'm paranoid there's something else going on. My levels were normal when I first had them checked around 18 months ago so don't get why they've shot up.

@Ifitistobesaid two injections in a box cost me £400.

@Ifitistobesaid so yeah as far as autoimmune conditions, I already knew I had hashimotos. Funnily after taking humira some joint pain I was having in my knee and ankles has improved too.

@ummidreams i know that feeling. I'm not on humira, but I'm on intralipids, hydroxychloroquine, prednisolone and I have to take gcsf now as I had a loss in November on that plan but my baby was healthy. That was an ivf pregnancy as well, so was on injectable progesterone and clexane too. I was worried about being oversuppressed but Dr S said I need more medication as it just wasn't enough.
It's hard to trust the process ❤️

Have you spoken to the clinic to book in for intralipids? I think its the right time.

It's interesting being on meds though, I'm usually allergic to a family member's dog and saw them on the weekend and I had no symptoms at all. Usually my nose is streaming, itchy eyes etc.

Hi @Ifitistobesaid when are you looking to do a transfer? We're doing a FET next cycle. Our last embryo from our first round- both ended in losses sadly.

Taking my first gcsf injection tomorrow. Really don't feel like this superovulation has worked 😕

Hope everyone is OK 💕

@ummidreams thanks for letting me know. That’s expensive but isn’t everything when it comes to Dr Shehata! I had my follow up consultation with him today and he doesn’t think my high TNF alpha is indicative of a deeper issue, just one of those things. Glad the Humira is having some positive side effects for you.

@VenusStarr I don’t think I’ll be transferring until August or September. I have a saline scan on Monday just to check there’s no scarring as l’ve had a few D&C’s. If that’s clear I will start the Humira and test my levels again after a month. If they’ve gone down I’ll start the down regulation my IVF clinic suggested for my adenomyosis and then transfer the cycle after that hopefully on the immune protocol from Dr Shehata. I have so many issues! Hard to have any hope.

Sorry to hear about your losses. Keeping my fingers crossed for the super ovulation this month.

Hi, hope it’s ok to join this thread. I am considering seeing Dr Shehata for autoimmune testing. After 9 miscarriages and all nhs testing coming back clear I feel this has to be the cause! Going to have a read through everyone’s posts now. Very apprehensive as it’s a lot of money and travel (7 hours there and back) plus worry about how I would feel on medication especially the steroids. Also wondering if anyone has been referred on the nhs and if so is this likely to take longer to be seen? X

@Ralowi back in 2017 I saw dr S privately and he advised he’d be happy for my GP to refer me. I live in West Sussex and at that time he had a clinic 1 day every couple of weeks in Haywards Heath. The waiting list was over 2 years and due to my age (41) I had no choice but to pay. I didn’t think to ask his waiting lists times for the Epsom hospital (Surrey) or if he’d accept me from out of area. Ultimately i went thorough the private clinic , it proved successful and I would recommend an initial consultation. x

@Naticle thank you that’s very helpful and I’m glad it worked out for you. Did it work straight away with the treatment? I am thinking private is going to be the best option time wise but I might give the clinic a ring and double check. I know when I was waiting for my recurrent miscarriage clinic I was told the wait was a few months so we booked to go private but then they ended up finding me an appointment through the nhs referral and there was only a week in it so stuck with that. Such a shame there is nothing closer to home but I do feel dr shehata is going to be our best option x

@Ralowi it wasn’t successful immediately. I had a further miscarriage (my 5th) and the the plan was amended to include hydroxy. It was just over a year of treatment before the successful pregnancy.

@Naticle sorry to ask so many questions, it’s just I’m worried about the side effects of treatment and In my head it’s 16 weeks to get through but obviously that’s only if it works first time. I assume you are on treatment each month until you get pregnant and that if you don’t you stop and re start it again at a certain point in your cycle?

@Ralowi exactly that for the pred. It was 10 days from ovulation. I seem to remember hydroxy was a longer term thing and I had to take for 3 months before ttc but I’ve seen recent posts and this may have changed

@Naticle thank you. I suppose I will see what he recommends. It seems to be between the hydroxy and the pred and that it may end up being both. I suppose at least if it is only 10 days then it may not cause too much devastation on the body/mind!

I had my saline scan today and all looks good apparently. There was a hairy moment at the start as there was a clump of something white which she initially thought was scar tissue, but as she moved the saline through it dissolved so was probably just mucus.

I’m really pleased as my periods have felt a bit weaker after my last D&C over a year ago and I was worried I had scarring. Has anyone else had changes to their period after the miscarriages or surgeries?

Good news about your saline scan @Ifitistobesaid glad there's no signs of scarring and all is looking well.
What's your next steps?

👋 @Ralowi glad you gave found this thread. He does have an nhs clinic but I think its a longish wait. He also isn't able to offer the full range of treatment on the nhs. I think it just depends on your personal circumstances. But I'd definitely recommend getting your immunes checked.

Our superovulation cycle was a fail. So waiting for my period to start and I'll be going straight into our frozen embryo transfer. I had to double my levothyroxine as my tsh went haywire, so hoping that's stabilised now. Feeling a bit flat with everything. Need to try and rediscover some hope for our transfer.

Hope everyone is OK xx

Welcome to the new ladies!

Sorry this wasn't the cycle for you @VenusStarr . Good luck with the transfer, I have everything crossed for you!

I'm currently in my 2ww. I'm only about 4 days post-ovulation and I'm already symptom spotting, as if there would really be any signs this early 🙄I have a follow-up with Prof Quenby later this week so I will see what she makes of my latest MC and whether she suggests trying any additional treatment next time.

In the meantime, I'm trying to enjoy the warm weather and am topping up my vitamin D from the sunshine 🌞

Hi,

Apologies I'm new to this thred but also using any kind of forum like this! I just need some advice! I'm 34 (35 this year) and have a beautiful 3 year old daughter but recently suffered 2 MC trying to concieve our second, all before 6 weeks. I'm lucky enough to live in Surrey and have been referred to the miscarriage clinic in Epsom. I have had my blood results back and my follow up phone call (not with Dr Shehata himself) and they have told me all results are normal but NK cells are high. When I asked what the range was that was considered high and where I fell on that range the consulant / doctor said it didn't work like that, if 200 was normal and I was 201 then I would be considered to have high NK cells. Without any other treatment options, or even suggesting we could try again and what the success rate would be she told me there would be a prescription waiting for me to pick up. This doesn't sit right with me so I requested my blood test results which I now have in the hope I would be able to google some kind of guidence on normal / abnormal NK cell ranges in relation to miscarriages. But I cant for the life of me find anything! Does anyone know how to interpret these things and what I should be looking for?

Thanks in advance!

@VenusStarr i’m so sorry this wasn’t the one for you. Sending hugs. I really hope this IVF cycle works out!

I had my 7 week scan today with Dr Edge. There’s still a strong heartbeat (actually maybe too high 145bpm) but bleeding around the baby as well as the pocket of blood now and she said she was seriously concerned that the growth is behind. It’s 5 days smaller, which I thought shouldn’t be an issue at that size but she said with IVF we know exactly when baby was conceived we’d want it to be much nearer the correct size now. Also it would usually be a sign of a genetic issue but she said it can’t be as PGT tested embryo. She warned me to expect MC but also said try to stay hopeful. She thinks it’s due to my immune response battling away again and that would mean the Tacrolimus hasn’t been able to suppress my immune response enough. So it’s not only scary now but also if I lose this baby it will take away all my future hope. Got to just try to get through to next Thursday for 8 week scan now. Somehow have managed not to cry as I’m too scared to let myself go back into that dark place yet. The pain, cramps and bleeding don’t help my stress levels though. Sending love to you all xxx

I have bitten the bullet and booked appt with dr s in July! Only thing is the follow up isn’t till 3 week after due to him being away. I have asked whether follow up can be done over zoom (apparently this is more expensive and might not be possible but if I email in they will look into it). Although suppose if I need treatment would they prescribe it there and then or send to my local pharmacy? Anyone any ideas? We will do it face to face if have to but it’s sooooo far away for us! X