Immune/NK cells - pred thread 28

[myrainbowjourney]

Hi Ladies

New thread 🥰

If you comment to hold your place. I'll try and tag as many as I can xxx

The sitagliptin helps with the stem cells in the endometrium, it works in conjunction with bone marrow to improve the “environment” for the implanting embryo. I think 😂

@BerryBright if I’m completely honest, when I initially went for the biopsy - it was a couple of years ago, at the time I really wanted to try Cyclogest to see if that helped but I couldn’t get anyone to prescribe it. So I went to Brosens, he wasn’t concerned about my low reading and prescribed me Cyclogest to see if it worked. I honestly really rate his clinic & the work they do. However, I don’t think it’s as in-depth with testing as Gordy & Shehata.

I’m currently in 2 minds if I should go the cheaper route, try sitagliptin with Brosens or just go for it & spent 3K+ with Gorgey or Shehata. I know I’m definitely not doing another cycle unless until I try a something different

It's difficult to know what's best @LuckyNo14 I know what you mean about trying a different approach before going back into it, I'm the same.

I think because the approach is so different, like you say shehata and gorgy are a lot more detailed but cost so much (we're around £12k in now). I think gorgy does uterine and peripheral nk cells and he uses ivig treatment. I know someone who's under him and she's had LIT and had her nk cells retested, I dread to think how much it costs. Shehata does the initial tests and then gives a treatment plan.

Would you need to have another biopsy with Brosens or can he just send you the prescription?

@VenusStarr 12k in with Dr S? 🙈 are you doing IVF with them or is that just for testing?

I seen on FB a woman who got initial consult with gorgy then went to fertilysis for testing. And then sent gorgy the report. She said she was £800 compared to his 2k for same testing.

I might do the consult with Gorgy which can be done over zoom, I’m up north so it would save me travel expenses until I decide if I want to go with him.

Yeah, think Brosens might ask me to come back down for another biopsy. I’m willing to do that though if that’s what he wants. I feel he knows my case very well and he’s also very responsive (I literally just email him directly and he responds 😂).

The NHS clinic I’m doing IVF said yesterday they think it’s just a case of bad luck. I don’t agree at all after 12 early losses & 2 ectopics.

What’s your next steps? Are you waiting for 3rd biopsy from Brosens? I like them because they’re using funding for all of their research so they truly have an invested interest in the woman they work with. I hate the feeling of being on a conveyor belt and feeling like it’s just one in, one out. My consultant at NHS clinic looked through my notes in front of me on the day of transfer because I asked questions about my aftercare due to history. She hadn’t looked at them before coming in to talk me through the procedure. Which worries me

Hi wondering if any of you ladies could help me interpret these results? Are my NK cell killing activity high?

All with Dr S @LuckyNo14 we've done about £5-6k on tests and the rest is the treatment. We ttc for 6 months naturally and I'm on the pre-conception complex plan, so had intralipids every 3-4 weeks. Our ivf is at a different clinic, so Dr S gives me the plan and my clinic follow it.

I definitely don't think your losses are just bad luck ❤️

My next steps are a FET next month. We've got 2 frosties, so will do both of those and then revisit Brosens / reevaluate our next steps. My ivf clinic think I need pgt-a testing, but we're unsure about that, need to do more research I think. X

Hi @Hema902 I think it looks like your levels are all in range but your layout is different to my test results from Dr Shehata. The results at the bottom are the nk cells I think and the ranges in brackets are the normal ones, so they all look in range to me. Are you meeting the specialist who ordered them to go through the results?

Have you found any abnormalities with Dr S tests? Have you done any rounds with his plan yet? I’ve heard of a few people doing pgt-a testing. Would you need to do a few banking rounds to be able to do that? Or can you stim, test fresh then freeze?

I’ve booked in to see Dr S in November. Feels like ages away. Despite my history I’m the most impatient person ever 😂

Hi Everyone. I've been lurking on here as unsure if I should post or not.

Had my results back from Dr S and said my natural killer cells are very high for pre-pregnancy.

DH had DNA fragmentation which came back high too. The Doctor we saw for that essentially told us to try again and that DH needs to wank a lot more (and here was me thinking he was a massive wanker already 😜).

He's 29 and I'm 30. We've had two MC and 1 CP. I feel really unsure about going headlong into Dr S's plan... it's incredibly expensive, and we're still waiting on results from the NHS to see if there is an explanation for my last MC. I rang the clinic and spoke to a nurse and said I didn't know if I wanted to go headlong into the programme Dr S has put together, and was essentially told to go and get the injections that reduce your immune system and then come back and talk to him...

Honestly I'm feel a bit upset and disheartened with the clinic. I don't think I can afford all of the treatments he has prescribed and the nurse was incredibly dismissive... I now feel really unsure if I can even trust the clinic (hence not being sure if I should/can post in here).

I feel like I'm so vulnerable at the moment and I really don't want to go through it again. But equally I don't want to take steroids because I'm already overweight and that could cause other complications.

And I'm annoyed because I feel they were totally dismissive about waiting for the results from the NHS...

I really don't know what to do.

I did my ivf round on May on Dr S plan @LuckyNo14 in my review with him, he said he thought my immune protocol worked, but I bled heavily at 7dp5dt and then tested positive, so he thinks it was implantation issues / progesterone. I did a mock cycle with Dr Jan at crp to test for endomitritis and infection, also did an ERA which came back receptive (in my fresh cycle I only had 108 hours instead of 120) so hoping its that. I'm adding in lubion to my protocol too.

My ivf clinic said I could test my 2 frosties but I don't want to put them through thaw and refreeze. We might embryo bank if these 2 fail but not sure about pgt-a testing yet. Plus I'm not sure if we can afford that, plus more ivf and immune protocol.

I'm glad you've got booked in, I know it feels a long time away but hopefully not too far now ❤️

@SunDance21 don't feel like you can't post on here ❤️ we're all just doing our best to navigate this shitty hand we've been dealt and it helps to talk to others who have been on a similar path. It's really overwhelming and you shouldn't be forced into a plan you're unsure of.
I do find the clinic are focused on their way and don't like to deviate from the plan.

What's the protocol he's suggested for you? When do you think your baby's results will be back? Ours took about 10 weeks - it was really upsetting to get our results (no issues were found) but we were told the sex too and it felt like I'd lost him all over again.

You don't have to make any decisions right now, keep posting in here, you're not alone xx

@VenusStarr they were sent of 12 weeks ago, so any time from now really. Not sure when we will get them.

I said I didn't really want to do any immuneocompromising things at the moment and that we can't afford £400 a month for the intripulids (my spelling is very bad sorry 🙈) but she just told me to go and get the injections and phone and book an appointment once I've had the injection... she essentially ignored me.

I know they throw everything at it in the hope that something works, but I would personally prefer to try some of the other things first. What if it takes 12 months to even fall pregnant? That's another £4,800 just on intrepids, completely ignoring anything else we will need to pay for. I'm just not sure I can justify that and the nurse made me feel like essentially if I don't do it I will probably have a miscarriage. She didn't say that exactly but it's how she came across to me and my husband, and it's made me feel like if I have another miscarriage because I can't justify the cost at the moment it will be my fault. And I feel angry that I've been put in this position.

*I think they are a bit cheaper than £400, £375? But I rounded up in my head. Just in case someone wonders why I'm being charged more 🙈

I hope you get your baby's results back soon @SunDance21 ❤️ I think the intralipids probably aren't essential as Dr Shehata works in the nhs and doesn't prescribe them for those patients. It is a lot of money. My ivf doctor thinks I'm over medicated, it is a lot of medication. We've been under him for nearly a year and only had a chemical pregnancy via ivf in that time, it's pretty soul destroying.

@VenusStarr I might email him and see what he says. My family have told me to ask to see a clinic through the NHS and take my results to them and see what they say, but I'm not sure if I can stand waiting that much longer.

I'm sorry for what you're going through ❤️ it's so hard just keeping on keeping on isn't it? :/ I hope it sticks for you soon

@BerryBright

I had two biopsy’s at Coventry in feb and March this year . Both came back as really low . Brosens told me that this is the common result he sees in women with recurrent miscarriage.

I was given sitagliptin to take for three months and told not to ttc in This time

I finished end of June . No pregnancy so far I’ve been told the trade off is it may take longer to get pregnant now as my womb will be more selective .

I’ve had 5 early losses in 18 months . This is following my son who is now 8. Pregnancy with him was totally straight forward

All my testing was normal with Tommy’s
We have had karotyping done and partners Sperm dna again all normal, this is the only test that has come back as abnormal x

@SunDance21
I’m sorry you find yourself in such a confusing situation. where do you live? I am in West Sussex and I first saw dr S age 41. He said he’d be happy for my dr to refer me to his Nhs clinic in Epsom but warned of the 2 year + waiting list. I didn’t have the option of time but you do (it may not seem it and I know that length of time is horrific) but you could ask if that is an option and what the current wait time is?
I am sorry you don’t yourself in such uncertain times.
I did find I had to ‘play’ the clinic. Stock up on pred and then leave larger than prescribed gaps between appointments. I then played dumb and said. I’d misunderstood : I had a miscarriage on his plan and at that point really resented getting intralipods for an unsuccessful pregnancy so I then didn’t tell the clinic when I was pregnant. Had my scan at 7 weeks on the nhs-waited til good news and only then arranged intralipids etc. Again played a bit dippy and said I’d my dates wrong.
You have options. If he won’t let you be referred be honest and say it’s too much for your mental health and you need a few months off. Say you’ll be in contact again in the new year.
Look after yourself x

@SunDance21sorry if a bit garbled!

@VenusStarr & @lozfish thanks both I’m trying to think that maybe it was just bad luck rather than stopping the steroids. This week has been particularly hard but I’m feeling a lot better than I was. I’m not under a specialist other than our ivf clinic although I did see an endocrinologist privately who I think I will go back to when I’m feeling a bit stronger. Unfortunately still bleeding and another positive test this week EPU keep saying to wait in the hope I will pass any leftover tissue but really think they should have scanned me by now, it’s been 5 weeks since op. I am having counselling next week at lilymae which I’m hoping will help me deal with the guilt and the trauma of the scan.

Morning ladies. I got my BFP this week, my first one on this treatment plan. Went in for intralipids yesterday and tested again today and the line is def darker. If anyone has any tips for how to survive the next few weeks until the first scan, please let me know. One good thing is that I'm feeling absolutely terrible already which I haven't in my other pregnancies so in some ways I don't have time to be anxious as I'm just trying to focus on my job with a splitting headache and waves of nausea. Hoping symptoms are a good sign this time. Hope everyone else is well.

X

Congratulations @Lozfish ❤️❤️

Congratulations @Lozfish ☺️

@InvisibleDreamer I'm sorry you're still testing positive, I agree, it's unfair to keep you hanging on, a scan to check what's happening would give you some answers and reassurance. It can feel very lonely ❤️ I'm glad you're feeling a bit better, it's really hard when things are ongoing and the grief comes in waves. Sending love xx

Hope everyone is doing OK ❤️

@InvisibleDreamer I think you should get the EPU to scan you - my retained product didn't come out after a monumental bleed earlier this year and the NHS wait list is so long for the surgery you need. It's definitely best to try and push them otherwise you're at risk of infection. It makes me furious they they just tell you to 'wait'. Keep us updated xx

Hi, I’ve been lurking here for a while and am after some advice. I’m with Mr S and on his complex plan with hydroxy and intralipids. It looks like I’m having a chemical pregnancy (hate that term!) as tested positive last week but now my symptoms are disappearing and the test lines have gone v faint.
I always felt confused why I wasn’t put on pred from the beginning and am annoyed with myself for not asking at the time as since then I’ve been worried that the hydroxy might not be enough.
It’s my 6th loss but the first one with Mr S. My question is what happens next? I’ll contact the clinic on Monday but will I be put on pred next? Should I push for it? I’m concerned about it as have heard it can have horrible side effects but at the same time I feel like I’d be happier throwing everything at this to try to get some success

I'm sorry @MissPMA what were your nk activation levels? Mr S didn't put me on pred until February despite my levels being exceptionally high. Did you go down for your intralipids last week?

You'll need to book a review appointment with him and it is likely he will now add pred into your plan but not until you've seen him for a discussion. Sending love, it's really awful to go through a loss on his plan x

Thanks so much for your reply @venusStarr, I‘m sorry that you find yourself here. I can’t remember the exact levels but they were both high and active. Yes to add insult to injury I went for my intralipids last week ☹️ I’ll email them Monday and hope that I don’t have to wait long for an appointment

I hope you're not waiting too long @MISSPMA hopefully you can get a zoom appointment, save you travelling again.
I'm sorry this is happening ❤️