Immune/NK Issues - aka Pred Thread no 26

[KtAgs]

This thread has been running for many years and has proved invaluable for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

Discussions cover immune issues, NK (natural killer) cells, thyroid issues, PGS and many many more.

Welcome to the group no-one wants to be in

@HoldingOn2Hope*@Crystal2020 @Wishing5tar*@hrtbrk2 @VenusStarr @jellystar23 @3verhopeful35 @hazlet2 @whyisthistakingsolong @NICK7nick7 @LR12 @Lalaifa @lookingforanswers86

Please tag anyone else I've missed.

@Lalaifa hiya I will deffo check that blog out thanks (I'm assuming your message was for me, I didnt realise we had 2 kittykat's on here) 😄 xx

Hi @Hippo20
I had my scan Wednesday with the professor and all is well ❤️
Scan was amazing I’m 13wks so bit ahead of what I originally thought,
I’m due to finish Hydroxy & Cyclogest at 16wks slightly nervous about it but also looking forward to not having to take loads of different tablets every day.
Hope your scan goes well Monday x

@LRL12 oh that’s brilliant news!! Hadn’t wanted to ask just in case. And great that the end of drugs is almost in sight... Just fab news, you’re going to have a wonderful Christmas this year :) x

@Lalaifa Glad it finally made an appearance. Those cyclogest have a lot to answer for! I’m a few days ahead of you in my cycle 🤞🏻 This is our month!!

@LRL12 such wonderful news, I bet your beaming! Xx

@LRL12 that's great news about your scan! Also good to know that you've got the same timeline for coming off the drugs as me, thanks for letting me know. X

Hello all,

I think I need your help... on monday, 6w+2 days, i had a scan, which show a tiny empty sac, 4mm. 99% non evolutive, I know it. Having another scan wednesday next week to confirm. Two days ago, CB indicated 2-3 weeks, OK; i thought, "it will take time".

Today, i started bleeding a little, brown, but CB now indicates 3+. I am 6w+7.

I don't know what to do, apparently there was nothing in the tube. Until yesterday i kept taking the heparin, but now that i started bleeding, should i stop? The Dr wanted me to keep taking it until the confirmation scan.

I am so confused, and we are saturday :(

Sophie

@Sophfr17 can you go to EPAU or A&E and ask for a scan today so you know before you stop your heparin?
I'm sorry your going through this.
I've had a blighted ovum before and even though I was bleeding my HCG kept going up and ended up having a D&C to remove but I have heard success stories so maybe see if you can get a scan earlier ?
X

Thank you @LaurenAB94

During my last loss in July i went to A&E, where I stayed 5 hours, bleeding, and they never scanned me. Only the next day, after everything was gone...

This time I called the emergency in a Parisian hospital, I am French; they have always helped me a lot in the past, even though I live in London... the kind woman told me that there is no risk for me carry on with heparin, unless I start bleeding a lot. She agreed to wait for the scan to confirm.

Like what happened to you, I am pretty sure this is a blighted ovum, and my Dr at UCLH already told me that I will have an aspiration on the 30th November if the scan next Wednesday indicates that it keeps growing, which I suspect.

This was our last natural try.... in January, we will move to either IVF, or egg donation...

Thank you so much for your kindness...

XX

S.

@Sophfr17 I am so sorry you are going through this and hope that the scan next week goes ok.
New year fresh start stay positive

@Sophfr17 sorry to hear you are going through this again :(. Re clexane I remember my doctor telling me it's such a small amount that it's fine to continue to take until you are 100% sure.

Re ivf / egg donation. Have you had the chance to test any/ more than one of your pregnancies? I just ask because I think doctors find it an easy answer to suggest ivf even when it's not the best route or option . I know you mentioned you never tried steroids/ immune treatment before...maybe it's worth getting tested/ trying this first. ..I know I was told if I have an immune issue sadly the same thing would happen if I went the IVF route...

Hi @LookingforAnswers86, thanks for your nice message

My partner and I spoke with the doc a few days ago, to start scheduling the new plan. Despite offering the NK test in his private clinic, he still doesn't believe in it, and he says it will delay things even more; I am running against the clock. The APS, the low AMH, the bad quality embryo, are all causing my losses. Besides, he wouldn't prescribe steroids for me, because of covid. He said no one should receive these drugs right now.
He said that IVF, starting january, will allow him to select best embryos. However, I will probably need 3 cycles of stimulation before even thinking of one implantation. We have no time to lose. And if, when my embryos are ready and PGS tested, let's say in June, covid is less present, he will give me the steroids. He doesn't want me to take them now.
The other solution is the egg donation, which I am considering. Apparently this would be my best chance.
My 1st baby, lost at 14w after termination, suffered numerous growth abnormalities which might have been caused by APS. The 3rd loss was missed mc, I had an aspiration and they tested the tissues. Nothing to declare, probably APS. I only took heparin for the number 5 and 6, but to him, these last losses were due to bad egg. He will have tested the actual one, if possible.

What we, ladies, have to deal with every day, week, month, is enormous, horrible and pure sadness. Sometimes I am wondering how we can still be standing.

I have to stay that reading you, although not participating enough, has saved me sometimes.

This 6th loss was the last one I could handle. I am glad my partner and I are strong, and surrounded by sensitive friends and families.

Xxx

S.

@Sophfr17 sadly I know exactly how you feel.

Personally I would get a second opinion and do the nk testing if you can afford to do so. I arranged an appointment with Dr S and within 4 weeks had the appointment and tests and 2 weeks later had my results. I am not pushing Dr S I have only started on his plan but others also do this testing. You would not be losing time. You could have results by Jan. I just say this because after my 4th loss 2 of my doctors said IVF was the way forward for me that it must be partly egg quality...and then I received my results saying normal chromosomes they suddenly changed their minds...had I not tested they would still be pushing IVF and regardless of age your consultant can not be sure your losses are due to bad egg quality...anyway that's just my 2 cent on it. It's hard to know what's right or wrong but for me I dont always think one doctor is right or has all the answers in particular when it comes to MC.

Mind yourself xx

Hi ladies, this is probably a long shot but has anyone ever needed to increase their cyclogest dose (to 1200mg/3 pessaries) when they’ve had bleeding?

Dr S told me to if I started bleeding, which happened either as a result of my hematoma or my lost twin (but more likely the hematome based on the colour of the blood and what scans have shown).

But I’ve now stopped bleeding and realise I don’t know if I’m supposed to just go straight back to the normal dose (800mg/ 2 pessaries). I assume so but the clinic is closed to ask them and I’m worried about doing the wrong thing.

Perhaps no one will know either but I thought I’d ask in case, thank you xx

Hi @Rebecca9876 I say this with no experience but I think one more day at 3 pessaries isn’t going to harm, so personally I’d continue with the 3 and then speak to the clinic tomorrow.

Thanks @Jellystar23 I’m sure you’re right! I actually reduced it in the end last night so not sure what to do tonight but hopefully two days won’t matter either way. Am so nervous about it getting it wrong and losing another baby :/

@LookingforAnswers86

I totally understand your point of view, which was mine until I started reading publications. I couldn't find a quality paper proving it. However it doesn't mean it is untrue. I am sure my Dr will rethink it if he manages to collect eggs with no anomalies... at least I will discuss it then.

I am glad you now have some hope; have you just started a new cycle, the one you will receive the cocktail of medications? I so hope it's gonna work for you, as it did for many other women from this forum.

I need to think about all that. I know I am strong, but I am scared and tired. But before, I need to end the actual pregnancy. I am bleeding a lot now, but nothing hemorreagic, and no pain, only headache. The 3+ clearblue likely indicates that I will need an aspiration. I emailed my doc, will see on monday.

Thanks again

Xxx

Hi @Rebecca9876 - if it helps, I refused to have a higher dose than 200mg and I'm still on that now. I really hate the progesterone. It disagrees with me. I also felt more reassured when I'd watched professor coorasomy talk about when extra progesterone helped in this video - vimeo.com/435660811. It sounds like you've totally done the right thing. It's still stressful though - especially as our treatment is personalised by Mr S. X

@KtAgs That's interesting that cyclogest doesn't agree with you. It doesn't agree with me either. I took it after egg collection in June and it wasn't too bad, but this time it's been horrible. Started taking it last week, after ovulation, and I've had an upset stomach ever since - I'm just on and off the loo and have constant cramps and backache. Is that what you found?

@Sophfr17 I'm so sorry to hear you're going through another miscarriage. My heart goes out to you. I know what you mean about wanting to pursue a treatment course that is proven, because I felt like that at the start of my journey. But what I've realised is that there are so many unknowns when it comes to reproduction/fertility/pregnancy, and that's because there hasn't been mass trials. Woman just don't want to take part in them when they're pregnant and vulnerable. I actually spoke to a very nice NHS doctor at St Thomas's hospital last week (I was put under their recurrent miscarriage clinic automatically, after my last loss in July) and he approved of many of the drugs Dr S prescribes. He said that they do know the immune system has a role to play in miscarriage, but it's just not proven how. He thought aspirin, steroids and hydroxy were all good ideas, which surprised me. I guess it just depends how progressive your doctor is. Ultimately, you have to go with your gut and try everything you can.

I really agree with you @Everhopeful35 about weighing things up and ultimately, just making an informed decision with the available info. If it helps anyone, these were the papers that helped me take the plunge with Dr S.

link.springer.com/article/10.1007%2Fs00404-014-3262-0

www.immunology.org/public-information/bitesized-immunology/cells/regulatory-t-cells-tregs

www.eshre.eu/Guidelines-and-Legal/Guidelines/Recurrent-pregnancy-loss

www.ncbi.nlm.nih.gov/pmc/articles/PMC6504766/

www.ncbi.nlm.nih.gov/pubmed/31630394

www.fertstert.org/article/S0015-0282(16)62868-6/fulltext

this is not a systematic review of course - just what I'vefound. I also have a look on pubmed every now and then. I found some stuff on intralipids recently as I was sceptical, but can't find the links

There were two things that made me insist on changing the dosage for progesterone - one - all my miscarriages are missed so i figure the thing that has maintained the pregnancy is progesterone and two, my last loss (on 400mg) I was so uncomfortable I managed to experience fecal incontinence and constipation at the same time (sorry if that's TMI). My NHS consultant said I could drop the dose part way through the pregnancy. I was much more comfortable after that. I know that my womb needed a bit of extra help being more fussy so a thicker lining which progesterone offers would be beneficial so a lower dose was a compromise. Mr S said 'I can live with that' when i said I wasn't prepared to go on a higher dose. Xx

Thanks @KtAgs and @Everhopeful35! I think I must have been lucky to escape some of those side effects, it sounds grim (although it may explain my ridiculous “bump” so early on, which can only be bloating). I guess as I haven’t started bleeding again today I can feel I’ve hopefully done the right thing and no harm done. My fault really for not double checking instructions with him at the time, but we’d just learned the twin was gone so I wasn’t thinking straight.

As ever, thank you ladies for the support and hope everyone is doing ok x

Sounds like I’ve been very lucky with progesterone. I don’t have any adverse effects really, other than the leakage but I can cope with that. Although I do think for this cycle I’m going to go back to twice daily (as per my NHS consultant) instead of both at night.
I wonder if it has anything to do with where we insert? I’ve always done it vaginally - has any one done opposites on back to back months and noticed any difference in side effects?
In fact, it stops my hair falling out so I have seen it as a benefit if anything 🙈😂

You know your body @Rebecca9876 and I’m sure you’ve made the right decision

Thanks for sharing the video @KtAgs. Very interesting - I’ve often wondered why treatments are continued if they didn’t work in previous pregnancies (heparin, progesterone etc) so it was interesting to hear at the end that they think they may have dual effects.

@Jellystar23 actually I just started bleeding again so I’m not sure - and it’s fresh blood with pink discharge/possible tissue (so doesn’t look like the old brown blood of the hematoma or twin we lost almost three weeks ago). I feel so stupid as I come on here and one minute it’s bad news, the next not, and now I think bad news again. This is just incredibly stressful and, honestly, I’m not enjoying this pregnancy at all, as much as I want to. If I still have a pregnancy now. Sorry I feel such a mess :(

@Rebecca9876 Please don't apologise - this is exactly what the group is for. We're here you support each other and there are going to be plenty of ups and downs and anxieties, given the amount of loss we've all been through. Don't panic about the bleeding - easier said than done, I know, but an SCH can be unpredictable and can cause a lot of blood loss until it passes (I've had one myself). Can you get to an EPU first thing tomorrow to check all is well/put your mind at rest? You said yourself that the second pregnancy sac was completely intact at the last scan, so it might just be a sign that it's being absorbed or some of it is passing out. I hope everything is okay - thinking of you xx

Thanks @Everhopeful35 - actually that is quite comforting (sorry I forget if you told me you’d had one before). I will try to stay positive.

I know some people’s EPUs are great but mine has been awful throughout lockdown. At least I hope that is why the care has been so bad this year during my miscarriages there.

The last time I went (a few weeks ago when I started bleeding from the hematoma originally), they refused to see me. Despite me begging/crying/bleeding/cramping/explaining my recurrent miscarriage history (which is supposed to mean I can self-refer there). A&E had also told me to present there straight away if the bleeding continued - which I did but again they ignored that. They said I had to wait a week for an appointment (I thought I was miscarrying at the time so didn’t want to wait that long; and as it turned out an earlier diagnosis with Dr S probably helped stop it getting worse) and refused to fit me in earlier, despite my being told by A&E that their protocol should have been to find space for me in those circumstances.

It’s not the first awful experience I’ve had with them this year, but I won’t bore you with that as I’ve gone on a bit! In a nutshell I’ve found it so traumatic going there - and not getting help when I’ve needed it - that I swore never to go again the last time I left in tears. And in real life I’m actually normally a fairly tough person.

I’ve emailed the clinic to see if they might see me tomorrow (unlikely I expect as they’re so busy) but otherwise I will wait it out for my 10 week scan on Wednesday and hope meantime.

You are very kind by the way. Thank you xx