Immune/NK cells - pred thread 29

[StillTrying10000]

Starting a new thread as the last was full.

Hi ladies, it’s been a while since I last checked in. I’ve not had the chance to catch up on the full thread but have read about some of your challenges. This is such a shitty ride.

Things are moving along pretty slowly for me and next step is EndomeTrio and immune tests tomorrow. How long did it take for your results to come back for these tests, if you had them?

Think I’m going to take a break next cycle as I guess it’ll start in a week or so. I stop progesterone tomorrow morning. So I think I’m headed for first FET in August. Pretty nervous about it all after six losses, our last being 2.5 years ago.

I have so many worries around pregnancy so trying to work through those fears atm.

Thanks for the advice on the heparin injections @VenusStarr ! I'm sure if I can get over doing the first one or two it will get easier. I don't usually mind needles in a medical setting, but at home it's different and I already know how badly heparin stings! But I will have to remind myself that the emotional pain of a MC hurts more...

Good luck with the testing today @MyEasterEggs . I've not had those tests done so can't help with time scales, but hopefully the results are helpful. I too have a lot of fears around being pregnant, almost to the level where I don't want to be pregnant at the same time as desperately wanting to be pregnant. It's a difficult place to be in for sure.

@ummidreams thank you, I had to turn off email notifications as there were so many so I just check now most days. I do have a follow up booked in and it’s 3 week after initial appt due to dr s being on leave, so that could work. Although they are having trouble locating me on the system and worried that the lady who booked me in didn’t actually do it (she did say she was new), so just waiting to hear back about that. So glad the side effects have settled, hope it continues. It’s gotta be worth it one day!! X

Thanks @Sezmarelda1 yes that’s exactly it. I took my clinic up on a free counselling session to help me process all the mixed emotions and it was useful. Helped me see that I have coping mechanisms but I need to get back into using them more…journaling and yoga especially. What helps you cope?

Would anyone be happy to share what specific tests they had done for immunes?

This is what I’m having investigated:

NK cytotoxicity w/ suppression w/ steroid, IVIg and intralipid
NK cell (CD69 cell assay)
TH1/TH2 cytokine profile

I asked about the CD15/56 assay as Mr S covers those too but they said CD69 tells them all they need to know for the treatment they offer.

Mr Shehata’s main issue with the Chicago tests seems to be the distance the bloods travel before testing so that’s not an issue in this instance. But I’m questioning the testing of one marker and not all three.

Just interested to know about other experiences of testing. Did you see anything in your results about these markers? Thanks 💛

Hi ladies so at my follicle scan last week I had 4 dominant follicles on one side and 1 on the other. I saw Dr Alex as Dr S wasn't in on Friday and she didn't give me the trigger as I had overstimulated - I don't think I had as previously dr s has still given me the trigger but she told me to test ovulation and ttc anyway.
I've been testing since day 10 and I'm now on day 16 and no positive ovulation test? Used both strips and digital
I usually ovulate day 12-15
Does this mean I've not ovulated this month? So annoying as she told me to have intralipid which I did and just feel like I've wasted all that money for nothing! So glad I haven't taken humira yet!
Not willing to see Dr Alex again, she said I didn't need aspirin or progynova whereas I've always been given these!

I've had a few counselling sessions too @MyEasterEggs , but sometimes I wonder if they make me feel more anxious overall. It is wonderful knowing I have someone to talk to during that period of time when none of my family/friends know about the pregnancy/MC though. Are you able to access more sessions, or just the one? My GP recommended the Insight Timer app to me a few months ago and I do find that helpful. I also like to pace around the house/garden with my headphones on listening to podcasts - I think it helps me burn a bit of my nervous energy. The neighbours must think I'm mad but never mind 😆

Is it possible the tests just missed the LH surge @HoldingOn2Hope ? Or maybe you've not ovulated yet. I'd keep testing for a few more days just in case it's later than usual this month. So much of TTC is a guessing game!

Hi everyone, I have only just received my confirmation of initial appointment with dr s which is in less than 2 weeks. I didn’t realise I needed to provide all my medical records prior to the appointment which I don’t have! I have submitted a request for them but my gp surgery are saying it will take 6 weeks (however just spoke to them and they are asking a gp if the records can be printed for next week which will allow about a week before the appointment). Has anyone else had this issue? Will he be able to work out what tests I need just from the history information sheet? Worrying now that it’s too short notice for him to give us a decent consultation!

Hi Ladies, my consultant has written to my GP requesting they organise a repeat prescription of folate for me, due to an MTHFR gene mutation. My GP has prescribed folic acid instead, and when I queried it they said folic acid is the only form that is available to prescribe. For someone with a MTHFR mutation folate and folic acid are not equivalent. Does anyone here specially get folate on prescription?

@Sezmarelda1 I take Solgar folate 400µg and buy it myself. You can get it on Amazon for around £12. I also take Inessa prenatals which have some food-based folate.

I don’t think I’ll do another counselling session as I recently came out of therapy. Helped to begin with but the constant poring over history became depressing. I occasionally have somatic coaching which I find helpful for being present and looking ahead. Guided meditations are a good shout. Another habit I’ve let go of!

Thanks @MyEasterEggs, I currently use Solgar Folate too (plus the folate in my Proceive multivit), but my consultant wants me on 5mg a day, which equates to 11.5 of the Solgar tablets on top of what I get from my multivit a day! I'll do it that way if I have to, but really struggle to believe the GP can only prescribe folic acid and not folate. 1 tablet a day would be much more palatable than 11.5!

I feel similarly over counselling becoming a bit depressing. At first it helps to talk things through and allows you to process your thoughts, but it can make it difficult to move on when you're constantly going over it...

@Sezmarelda1 is this for FET? I’ll be upping to 1000µg in my transfer cycle and there are single capsules for that. I’ll also be adding in cytoplan methyl factors, which contains added b vits inc. folate, plus cytoplan nicotinamide riboside, a special form of b3. This is the recurrent miscarriage protocol I got from a fertility nutritionist. I might run it all by my clinic to get their input though as not sure it’s close to 5mg. I get a lot from food though…

No it's not for FET @MyEasterEggs. I have a MTHFR gene mutation which means I don't metabolise folic acid very well. It's a very common gene mutation, and has been linked to recurrent miscarriage (although many people with the mutation don't have any issues). The treatment is simply to take folate instead of folic acid. I'm not sure why they recommend such a high dose though, perhaps they assume people with the MTHFR mutation will be deficient to start with and need a higher dose to build the level up?! Thank you so much for pointing out that you can get 1000µg folate from Solgar, I hadn't realised and this will be SO helpful if my GP can't prescribe what I need. I just saw on Amazon you can get higher doses too but I don't recognise the brands which makes me a bit wary.

@Sezmarelda1 yes, I have the same mutation, so have spent a fair bit of time wrapping my head around folate needs. My understanding is that 400µg is okay for now and increasing to 1000µg/adding in methyl factors at time of FET will cover my needs. I’ve had all b vits tested though and they were within normal range.

So guys anyone here on cyclogest 400mg x2 and bloated to the point it hurts to sleep, my back hurts like my spine is being compressed. Feel I'm up to my neck in fluid. It's probably the steroids too. Aaaah the constipation it's getting to me.

Does anyone know if I can take anything for it like dulcoease/senna??? Is it safe or will I mess things up since I'm on my 2ww?

@ummidreams you could speak to your GP or pharmacy about senokot. I believe that’s been trialled in pregnancy and would therefore be safe. I’d avoid dulcoease.

Meanwhile, try foods that are high in fiber: prunes with kefir yoghurt, avocado and lentils in salad. Snack on a banana and berries. I find coffee really helpful. But I’m decaf so have the clipper organic stuff which doesn’t go through chemical processing.

I’m no expert but chatted with nutritionist as I get really bad constipation in pregnancy and have just had a rough time on progesterone…

Thanks @MyEasterEggs , I will have a look into methyl factors, I'd not come across them before you mentioned them. I also had my folate and B12 levels tested and both came back within normal range, and also had homocysteine tested which was in the normal range too (although I'd been taking folate instead of folic acid for a long time prior to the test). It's one of those things with the MTHFR mutation that it may not be causing the MC's, but of course we want to make sure every base is covered and it's relatively simple to make the switch from folic acid to folate.

Sorry you are feeling so uncomfortable on the meds @ummidreams . Water retention is one of the big side effects of steroids so it could easily be them to blame. @MyEasterEggs gave some good suggestions. Also try to minimise your salt intake and as backwards as it sounds keep drinking plenty of water. It may be worth a chat with a pharmacist or your GP, constipation isn't uncommon in pregnancy so I'm sure they will be able to advise on the safest thing to take if diet changes aren't helping quickly enough x

How did you go about having homocysteine levels tested @Sezmarelda1? That’s on my list of things to check off!

@MyEasterEggs I had an appt with my consultant at my local nhs recurrent miscarriage clinic and I just asked then if they would test it for me. They agreed without any hesitation.

@Sezmarelda1 I’m no longer under the care of my RCM but may ask GP as they’ve carried out a few tests for me. Thanks

Hello ladies, I've just been reading this thread and wish you all the best of luck.
I actually wanted to ask @StillTrying10000 and @Sophi81 about your experience with GCSF.. I was on the pred + intralipid protocol trying to conceive naturally, and after having had a chemical, Dr Shehata would like me to now add GSCF to the treatment.
Did you have any success with it at all, any bad side effects,... I can't find many people who have actually taken it...
Also the clinic did not tell me they do not stock it, am I right they will only give me a prescription and ask me to go buy it myself elsewhere?
Many thanks :)

@HollyLucky I was in a similar situation to you and Dr S added it. I tried probably around 8 cycles with it included in my protocol. The only symptom I had from it was the bones in my legs used to ache a bit, it was an odd sensation but not an issue. I think my bone marrow was swelling or something. The needles are small and the chemical doesn't sting or hurt at all (unlike some of the others like Fragmin which stings like a bitch, it's a nicer of the injections). Sadly it didn't work for me but loads of women in the US have success with it, they call it Filgrastim or Neupogen so have a search online for those names and you will find a lot more info.
Yes CRP will give you a prescription and phone as many chemists as you can to get quotes (call it Filgrastim not GSCF when speaking to them). At the time I found Lloyds pharmacy to have the best price £325 for 5 syringes, may be worth trying Asda though as these days I find they are cheapest for everything. I certainly think worth a try - good luck! xxx

@StillTrying10000 Thanks so much for your response! Were those 8 natural cycles or 8 IVF cycles? I ask as I will be doing a FET..
I had a quick glance on google and saw some studies which show Filgratism does not make a different in recurrent miscarriage :( But will keep digging some more! I guess as long as it does no harm, then worth trying it even if it might not make a difference?
Do you still have GCSF in your protocol or have you now stopped it?
Thanks again! xxx

@HollyLucky ahh good luck with FET. I did 3 superO and then 6 fresh/frozen transfers. I had 3 syringes left so I did take 3 at the beginning of this FET which has worked (currently 9 weeks) but that’s down to me using this new drug called Tacrolimus. By the way you can pay £20 for CRP to give you written prescriptions for all the drugs and get them from Asda and save literally thousands! Took me 5 cycles before I figured that out! They don’t like it but Mr J was quite happy to do that for me xx