Immune/NK cells - pred thread 30

[Sezmarelda1]

Starting a new thread as the last one was full. Please tag anyone I may have missed from the old thread...

@Sophi81
@InvisibleDreamer
@birdbybird
@Ralowi
@HoldingOn2Hope
@MyEasterEggs
@Tgrf55

@Ifitistobesaid
@VenusStarr
@Amy00
@Hayley220
@whatsgoingon22
@MrsMargot

Hello ladies,

thank you @Sezmarelda1 for tagging me in the new thread. How are you doing?!

iI had a bit of a rollercoaster. After the miscarriage at home I was still bleeding and I went to the local EPU for a scan. I had some bits remaining and I pressed for a D&C. Had the D&C a week ago and now I am at the end of bleeding. Weirdly I feel better now that I know I can press reset…

Saying that, I fell massively off the wagon with nutrition.. I need to start the AIP again. I believe one of you asked whether I was doing it to manage a different condition. No. It was suggested by my nutritionist because it is supposed to calm your immune system.

other than that, I am eagerly waiting for my appointment with Dr S to plan next steps. And I need to loose weight 🫣. I was about 10 kilos less when I had my successful pregnancy and I am starting to wonder whether this made any difference.

sending a big hug to all of you!

Hey,

I am finally biting the bullet and joining you guys after trying to read through as many of the threads as possible. I have found them hugely helpful over the last few months.

I first met with Dr.Shehata in May 22 following two back to back miscarriages. First was a spontaneous one at 6 weeks in December 21 and the second was discovered at my 12 month scan in April this year where the baby had sadly died a couple of days before.

Today I got my second month of a BFN after being on Shehata's immune protocol and to say my anxiety has gone up would probably be an understatement. I appreciate two months of BFN is absolutely nothing in the grand of schemes but I am now concerned there might be a reason and I swear my periods are slightly lighter following my D&C.

I am 32 so I know I have some time (I hope) but I am hugely aware that my mum had five years of infertility following an early miscarriage and finally did IVF resulting in me. Every doctor keeps saying there is no link however I just can't fight the feeling and anxiety.

I guess I just wanted to join a gang that understands and that I can vent too! xx

Thanks @Sezmarelda1 for setting up the new thread, hope you're doing well.

@MrsMargot so sorry to hear you've had to go through even more trauma. Hopefully it is all over now though and you can start looking forward. When do you have your appointment with DrS? I need to get mine booked in for when the genetic testing should be back. I'm completely with you on falling off the wagon with nutrition! Went to a beer festival yesterday and got Chinese takeaway for dinner, feel awful today! I've decided it's fine to eat/drink what I want for a few weeks as I'd been so strict on myself for so many months, now is the time to cut some slack and look after myself mentally. Then get back on it after my holiday next week. Do you do the full AIP diet? It looks tough eliminating absolutely everything.

@Mabelledox sorry to hear about your losses. It's always hard seeing a BFN and I'm not surprised you are worried with what your mum went through. Hopefully though you will have success in the next few months - the clinic always said to me months 4-6 seemed to be the most successful! Sadly wasn't the case for me and I turned to ivf after 7 cycles on the protocol, partly because we found out we also have a male factor issue going on that must have developed over time as we had no difficulty conceiving before! What's your protocol?

I've just had a depressing call with an NHS fertility consultant who is going to refer us for NHS funded ivf (we already went private as NHS takes so long but we are still eligible), which is great, but she was very dismissive of immune suppressants for treatment of recurrent miscarriage and said she had seen a number of cases of women in hospital who caught awful life-threatening infections while being on immune suppressants for recurrent miscarriages so she said she really couldn't recommend it and that the evidence isn't there yet. She also told us to be "realistic" as we have had so many miscarriages and ivf isn't a treatment for that (of course I know this!) but the use of the word "realistic" has upset me - does she mean be realistic in that we might never have a baby?! 😭 it was just a very negative phone call with lots of downsides but she couldn't offer any solutions - just "keep trying" and "IVF is likely to exacerbate the issue" !! Urgh. Great.

@Amy00 how is IVF going to exacerbate the issue??? 😡. So they can’t offer any solutions yet want to critique you for trying different options? What a cheek!

@Amy00 You are not meant to be on AIP for longer than a month or so. After that you are supposed to turn into a light Paleo diet. And I am saying light because red meat everyday can be inflammatory. I did AIP for 8 weeks to start with and then I was on Paleo for a couple of months. I won’t lie, the first 2 weeks were hell. I have a couple of cookbooks and we were cooking from that so finding the foods to eat was not an issue. The issue was sugar! It really is a drug. I had such a difficulty quoting but after 2 weeks it was a breeze. And to be honest I have never felt better in my life. The only thing I was really missing was some good bread. My appointment is at the end of September. I cannot wait. Especially because we will get news from the karyotyping.

can I just say that this IVF lady was the worst?! I would say something stronger but I should be cordial! So insensitive! And what does she mean?! What is her solution. I feel for you because I had similar conversations with NHS specialists. They did ‘advice’ to do IVF privately because they could not offer it to me but when I was asking but what the issue is with the miscarriages they were saying ‘well I do not know’. Do not get discouraged. What I know from this experience is to advocate for myself and ask questions. If they cannot answer them, they are not specialist enough. (Which I said to a so called specialist that said my miscarriages were bad luck due to my age and bad quality embryos when he knew from testing the babies were normal).

With regards to immune therapy, there are two camps: those that really believe in it and those that really do not. Apparently, talking to my previous doctor, Dr S’s research is ‘new’ hence some doctors are against.

@Mabelledox welcome! I am sorry for your losses… with regards to period after a D&C, after my first, it took about 3 cycles to return to normal. It was indeed quite light. After my second, it returned to normal immediately. Now I am waiting to see what will happen after the 3rd 🙄. My info comes completely from my own experience but I am sure it will be your normal again. With regards to the BFPs, I feel you. They are so nerve racking. If it makes any difference, my last pregnancy was at the 4th cycle on Dr S’s protocol.

@Amy00 that's awful, surely in a way ivf is better as you're selecting a healthy embryo and not chancing it each month (especially if you are older and egg quality issues- sorry I don't know your age!). Even if you don't go down the genetic testing route they grade the embryos don't they? I am considering going down this route but I feel like I'd need to combine it with the immune protocol because I also see dr Shehatas point that the probability of having numerous miscarriages due to chromosomal issues is just not possible so it has to be an immune response if everything else has been ruled out. Which is has been for anyone who has been and paid his fees lol

we are putting plans to try the treatment plan on hold due to my mental health at the minute, awful insomnia which would have usually improved by now. Anyway when we first decided to start trying at the beginning of last year I was concerned about being on amitryptilline which I had been prescribed for sleep. I had a pre conception consultation with an nhs gynaecologist and was told it wouldn't be a problem. Fast forward to today, almost 2 years on and I've been back to drs for help.l (have been off the amitryptilline for a while). Said I wanted to try a medication that might be safe in pregnancy if I needed it and he flat out said you can't take amitryptilline!! So been prescribed citalopram for anxiety in the hope this will help. I have tried many anti depressants in the past and none have improved my sleep so I'm not massively hopeful. He said it is less risky in pregnancy and often the benefits outweigh any small risks. Is anyone else on this meds?

Hope everyone is okay and thanks for adding me to the new thread x

hi all,

i'm new here but hoping i can join in on the convo because i am in a similar sort of situation as you well!

first off, i am sorry for all of your losses. i know how hard and frustrating it is 😣

@Mabelledox i had a D&C in March following my miscarriage at 13+2 and i didn't get pregnant until 3 cycles after. found out it was due to my prolactin level being very high so it might be worth getting that checked out! Since then i have had 3 back to back chemical pregnancies and so i am due to see Dr S in October. I was wondering, for those of you who have already been to see him, do you have to wait for your follow up appt to start your treatment plan or does he prescribe you something (if needed) at your consultation?

Any help is much appreciated!!

xx

Hi all. I commented on the last thread last week about lining issues I was having during my FET. Well luckily my lining has gotten thicker so it looks like my transfer is going ahead next week.

I start prednisolone from tomorrow and fragmin from today. I should have started it by yesterday but wanted to make sure the transfer would be going ahead. Hopefully a day late won’t make a difference.

For those who have been on pred and fragmin how did it make you feel? I’m already feeling pretty yuck from the estrogen, hydroxy and metformin.

Hi hope everyone is all good and well as can be.

@Sezmarelda1 thank you for adding me 😃

@MrsMargot aww I'm so sorry hear of your experience. What is an AIP?

@Mabelledox sorry to hear of your losses. I feel quite deflated too being on the protocol.

@Amy00 I'm not on any diet. Probably 1 of the reasons I'm not losing weight or getting pregnant 🤷🏽‍♀️ . What is a male factor issue? Omg I'm shocked at the treatment from nhs?! That's just terrible but it doesn't surprise me. I remember when I was under the recurrent miscarriage clinic on nhs and I rang the consultant to give him an update on my second opinion (CRP clinic) and he said to me if you want a disabled child then that's your choice go with your own consultant! I was like woah. I even said to him that ur not really helping here by saying that when you haven't done anything different to help with my losses. He turned around and said you will have a "take away" baby within the next 2 years! I was not prepared to keep trying and losing which is why I went ahead with Dr S.

I had my 10 week scan yesterday and everything is looking good so far. Two of my losses were second trimester so it's still difficult to relax and picture a successful outcome at this stage but we're cautiously optimistic.

I'm glad you're reaching the end of the bleeding @MrsMargot , I totally get that feeling of being able to press reset, it's almost like being in limbo just waiting for your body to reset itself whilst you're still bleeding isn't it?! Will you wait until you've seen Dr S and started the AIP diet before trying again?

@Amy00 I'm sorry the fertility consultant was so harsh, this is a difficult enough journey as it is without insensitive doctors thrown into the mix. I guess in some ways she is right that IVF is primarily for treating infertility rather than miscarriages, but if you're now struggling to conceive then it's important that BOTH factors are addressed together. If you go down the NHS IVF route will you be stuck with this particular doctor or could you ask to see a different one? They can vary so much in their bedside manner and their knowledge and support of immune treatments.

@Ralowi I definitely think it's important to consider your mental health in all of this. I've had a really hard time myself and sorting out my sleep has helped enormously with my ability to cope. In my previous pregnancies I've had horrendous insomnia and my anxiety levels have been through the roof. In my current pregnancy I'm generally sleeping well and lo and behold my anxiety is much better too. I'm convinced the two are linked but it's hard to say which influences which - if the anxiety causes the poor sleep or vice versa. I took Amitriptyline prior to conception this time around, because I needed to get my sleep back into a healthy pattern. I was told a few years ago that I could continue Amitriptyline in pregnancy (I was taking it for a chronic pain condition) but with my history of recurrent MC I came off it in previous pregnancies. This time I've realised how important sleep is whilst pregnant so I've used it only if I've had 2-3 less good nights sleep in a row to kick me back into a better sleep pattern, and only at the lowest dose which seems to work perfectly well for me (although I know we're all different). It's a tricky decision to make, and you have to weigh up the risks and benefits. A lot of the caution doctors express about medication in pregnancy is simply down to a lack of research, as it's not ethical to do clinical trials in pregnant women. I like www.medicinesinpregnancy.org for giving a balanced overview of different medications in pregnancy (see www.medicinesinpregnancy.org/Medicine--pregnancy/Amitriptyline/)

@Ifitistobesaid that's good news about your lining, fingers crossed the transfer goes ahead as planned. I started pred in July when I got a positive pregnancy test, and Fragmin after my 6 week scan. I've had some issues with pred causing low potassium (it's not a very common side effect) but otherwise I've had no problems. I'm on 20mg. Fragmin has also been so much easier than I expected. I was really scared to give myself the first injection, but within a few days I was fine doing it and 4 weeks on I don't bat an eyelid when it's time to do it. You can control how quickly you inject, so if it stings a bit you can go slower to help. I've not experienced any side effects apart from some rather colourful bruising at the injection site.

Welcome @Mabelledox and @comingsoon786110 but sorry you both find yourselves here x

I decided to give superovulation 1 last try. They have changed my plan to Letrozole and Gonal F injections so fingers crossed I’m hoping this works!! Although it’s making me feel really anxious and scared as I’m not sure what reactions I will get from these injections 😬. If this doesn’t work then I will go straight to ivf locally I think as it will be difficult to go to CRP regularly. But will continue the immunes with them if need be.

@Sezmarelda1 glad to hear it all went well at your scan 🤞🏼

Is anyone seeing Shehata or the team under him at NHS epsom st helier hosp?

I am currently on the waiting list and its looking like it wont be until next year until I am seen. I want to have a break for at least 3 months now because I have just had another loss. So that takes me to christmas/new year before I would ttc anyway. So maybe waiting a couple more months to get a plan in place is sensible. However, I am 36, will be 37 in April and scared the clock is ticking. I dont really want to spend 8k privately with Shehata (im assuming thats the miminum these days for one pregnancy) once you have had the testing, then the intralipids and other meds, then the regular scans I have worked out it must be 8k, am i right?!

For the sake of maybe 3 months I am not sure its worth spending that, however if I would get better chance of having a baby by seeing him privately then I would do it. Does anyone have any experience with this.. nhs epsom hosp or private at crp.. whats the best thing to do, am i wasting my time waiting to go to epsom hospital?

hope someone can help me xx

@Sophi81 it is called Autoimmune Protocol. It is an elimination diet that is supposed to get rid of inflammatory foods and improve immunity. It is hard but I found it great for myself.

@Sezmarelda1 Excellent news on your scan! I know what you mean by not being able to relax but being cautiously optimistic is good! ❤️❤️❤️
I have gently started eliminating things from my diet and once we hit the next food delivery I will get what is needed to go full on. We will see. It will be good for debloating at the very list. Pred and Progesterone had some impression on me 😬.
I have no idea when my period will come but it looks like that we won’t be able to try before November. I have 2 work trips in October and I have no idea when ovulation will be. That is if I do not need any special treatment. we will see.

@MrsMargot thanks. I don't think I've heard of it before. So do you use a website or a book that helps you with this diet? Where can I get more information?

@Sophi81 it was recommended to me by a nutritionist to follow for 3-4 weeks as a reset. I did end up doing it for much longer but after a while you get used to it. I do have a couple of cookbooks but if you Google it you will find a lot of information and many recipes!

Hi gals! Can I join please? I've just gone through Dr Shehatas clinic via NHS and been diagnosed as having high NK cells. Looking for a bit of advice and support really as I don't really know what this means for the next steps. I'm picking up my meds today or tomorrow and I'm a bit freaked out about the prospect of taking steroids. Has anyone had any dodgy side effects?

@Hayley220 yes me. I've come via NHS. I've only just got my diagnosis so I'm processing it all as whilst it was a shock, it also wasn't (if that makes sense!) happy to help if I can 💕

@bunnykins123 thats great you have a diagnosis. Do you mind me asking what they prescribed? And how long did it take to get an appointment from your Gp referral? Did you see Shehata or another consultant?

thankyou xx

is there a facebook group? Would anyone be interested in joining one? Xx

Hi everyone, I'm new to the thread but have been following for a while, gathering information! I'm so sorry for how difficult everyone's journey is to having a baby. It's so so hard :-(

Sorry this is soooo long, but I would really appreciate your input!

I found out yesterday I am having another missed miscarriage. Our baby's heart beat stopped a few days ago. This is my third consecutive missed miscarriage. Each time I have no outwardly signs anything is wrong and I have required a D&C, which last time also left me with an awful infection and scarring in my womb.

I have been seen by Prof Quenby at Tommys and was found at my first biopsy to have crazy high uterine killer cells. However my second biopsy showed a completely normal result - so I was not offered any prednisolone for future pregnancies.

I also went to Athens in June for a hysteroscopy to clear scarring and infection (it went really well with final result 97% good bacteria, infection and scarring cleared). Here I was given low dose prednisolone to try in future pregnancies due to the level of inflammation seen in my womb. I also had the Chicago NK cells test done and my numbers came back seemingly normal. I understand this is a different test to the one Dr Shehata does? But not totally sure.

I'm trying to figure out what I do next. We have exhausted all our savings going to Athens for the scarring treatment so I'm scared my options are very limited now.

You all have so much knowledge, I wanted to ask if you thought, based on my history, that it would be worth a consultation with Dr Shehata? Anyone else have normal NK cell levels results with other clinics, but still show highly activated cells with Dr Shehata? I don't know whether I'm clutching at straws that my problem could be immune related or if I need to accept my eggs are no good?

• I have a son who is nearly 4 (conceived after being on a very strict anti-inflammatory diet to calm inflamed bladder)
• My husband has good sperm and dna frag results
• Three consecutive missed miscarriages all around 6-8 weeks
• Cleared of infection and scarring
• Was on baby aspirin, 10mg pred, progesterone for latest loss
• Have been on supplements etc. for 2-3 years
• I'm 35 years old

Can I also ask, for those that were referred via the NHS, are you local to Dr Shehata's clinic? Or could I possibly be referred too (I live in Warwickshire) and if so, how long did you have to wait for an appointment?

Last question - has anyone had the tests with Dr Shehata but proceeded with treatment in other ways? I'm wondering if I could convince Prof Quenby to give me the prednisolone next time and I could pay for Intralipids locally if required. I know we don't have the money for all the scans with Dr Shehata!

Thanks in advance for reading. I've cried all night long so my head is a bit of a jumble.

xx

I'm really sorry @HopefulH ❤️ I saw Professor Brosens before we saw Dr Shehata. It was during covid so only had one biopsy unitally that was normal but had my 4th loss (3rd MMC). We tested the baby and they were healthy. I did see Professor Quenby at the time who was convinced I had chronic endometrisis and wouldn't offer any further investigation or treatment.

I saw Dr S and my activation of nk cells is exceptionally high. But once I started treatment we couldn't conceive. We went to ivf then. I managed to go back to Professor Brosens for the second biopsy and then had very low (0.71%) nk cells which he said was indicative of poor stem cells. We didn't do any additional treatment at the time as was doing the ivf. My fresh cycle was a chemical. I was checked for chronic endometrisis and infection and was all clear. We did a frozen embryo transfer last October on prednisolone (25mg), hydroxychloroquine, intralipids, clexane and 2 types of progesterone. It ended in another MMC (after seeing a heartbeat). It was a healthy baby.

I've since done a course of sitagliptin from professor Brosens for the low stem cells. But I think its not helped and likely caused issues for me.

Dr S has added gcsf injections to my plan. But we've not had chance to use it because since my d&c I now have lining issues. I had a hysteroscopy with Dr Jan at the crp clinic and its all fine. So no one knows why my lining isn't responding now.

Seeing him privately isn't cheap, I've been under him for 2 years in November, at one point having monthly treatment with him. We've had 2 losses on the full complex plan. Sending love, it's soul destroying.

@Ifitistobesaid good news on your lining 🤞 for transfer

No news from me, I had my cycle 3 bloods redone and my estradiol is too high, so until that's controlled we can't proceed with ivf. So we're on a break at the moment. It's an anniversary of my second loss tomorrow, 3years. 5 years ttc and fed up. Hope there's better news for others. Sorry not to tag everyone, it's upsetting that there's so many of us in this position x

@Sezmarelda1 Thanks and congratulations on your 10 week scan. I know you are still nervous but it is a huge hurdle out of the way. I did my first fragmin injection last night - it stung a bit and I have a huge bruise but was fine really. Do you still bruise as much a month in or does your body get used to it?

@VenusStarr my lining was at 8.4 yesterday so they were pleased with that. I still think it’s a little thin but I have to trust them I guess. Sorry you’ve had another delay. Does the estradiol affect chances at FET or were you going to do a fresh cycle? Is there anything you can do to bring it down? I don’t think mine was checked before my FET. I hear you about the time ticking on, it’s almost 4 since my first loss and I feel like I’m in a game of snakes and ladders.

Welcome to the new posters.

I'm hoping it was left over from my cancelled FET @Ifitistobesaid Geri told me it's too high for ivf. I'm waiting to hear from my ivf doctor. I need it retesting next cycle. Still trying to transfer our last embryo.

My last FET was 8mm and she implanted perfectly. Because of my lining issues now, we're only aiming for 6.5mm which makes me feel crap as that's less likely to be successful.

@VenusStarr ah ok well I hope the IVF doctor can provide some clarity and give you an estimation for when you can progress. I wouldn’t be suprised if it’s leftover from the FET given the levels we have to injest.

Breaks in treatment are so frustrating. I sometimes find them a relief too but it depends on my mood. How are you feeling about it?