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

@LuckyNo14 thanks so much :) I am so so relieved! Hope all is good with you x

Hi everyone, I’m going to see Dr Shehata for the first time at the end of November and I’m getting more and more nervous if I am pursuing the right path having immune investigations, and I just wanted to ask those that are further down the line - did you feel confident immunes was a problem for you prior to your initial investigations? Did you have obvious signs? Also, those with Dr Shehata - does he ever recheck your levels when you are pregnant? To make sure dosage etc. is still effective?

It’s very encouraging reading that so many of you are finding treatment is helping you and your babies! Xx

@Sezmarelda1 sorry I missed your last msg! Omeprazole sorts the heartburn out it’s my new favourite thing 😂
some people do get insomnia in pregnancy. I guess it’s just one of those annoying side effects you may be stuck with. Have you spoken to the Dr about it?

@HopefulH i had absolutely no inclination that I would have high NK cells but dr Shehatas name kept coming up when I was trying to find someone who could help. I went to see him certain I wouldn’t have high NK cells and I did. They don’t test your levels while you’re pregnant, the treatment programme is tailored to you based on the results and he would give you far above the amount of steroid you need. I have nothing but good things to say about the clinic they’ve been amazing to me. I hope you get some answers xx

I'm glad you've got something that helps with the heartburn @Tgrf55 . I used to suffer with it years ago (side effect of a medication I was) so can sympathise. I found Gaviscon and raising my pillow in bed helped - I bought one of those V shaped pillows and still use it to this day even though I no longer suffer with heartburn very often, it's just more comfortable for me...there are certain foods that are more likely to trigger heartburn so it's worth looking those up if you haven't already.

I'm seeing my community midwife again on Monday so I plan to speak to her about the insomnia. I'm so tired it's making me feel a bit burnt out, so I can't go on like this. I've booked a couple of days of annual leave next week so that I can get some rest and hopefully feel more on top of things again.

@HopefulH I've not had immune testing done (I'm under a Tommy's NHS doctor) and am on a few different meds (pred, progesterone, high dose folate, heparin, aspirin) so it's impossible to say which has helped in this pregnancy so far (I'm 18 weeks), so I don't know if my thoughts will help at all...I do have an autoimmune condition that I was diagnosed with in my early teens, and my consultant felt quite strongly that that was an indication that my miscarriages were likely to be related to immune issues, and she was happy to treat me with pred on this basis without further testing (there's not much further testing available via the NHS or via Tommy's in terms of NK cells anyway). All my standard miscarriage blood tests came back normal, as did testing on the placentas of two of my later losses. It's really hard to know if you are going down the right path, but I personally had reached a stage where I felt I had to do something differently if I were to try for another pregnancy and I do feel better mentally in this pregnancy knowing that I am throwing lots of different meds at it. If it doesn't work I'll take comfort in knowing that I have tried all these extra meds.

@HopefulH No I didn’t have any signs of immune issues before I went to see him. I had a completely unremarkable health history before trying to conceive. We decided to see him as I knew at least one of my losses had normal chromosomes and I had a normal hysteroscopy. So that ruled out egg quality and structural issues. I didn’t really know where to turn but on the forums and Facebook groups I’m on people seemed to be having success with Dr S / immune protocols.

He did also diagnose me with PCOS (which other doctors missed) and has put me on metformin as well as pred, fragmin, hydroxy etc.

I’m only 9 weeks so too soon to know if I’ll be a success story but it’s the furthest I’ve gotten.

@HopefulH I didn't have immune indicators other than the miscarriages. I had one early Mc nearly five years ago then a big gap of infertility then eventually a surgery to remove an adhesion (that had previously been mis-diagnosed). I then fell pregnant naturally twice pretty quickly but both ended before 6 weeks. At that point I went to Dr S and I have 3 different things/results that show I need immune treatment. I used an IVF embryo (as still had 2 left then) and had a short pregnancy on his plan, but it is the furthest we've got in a pregnancy (excluding my 6 year old) so I do think it could work. I already have a naturally conceived dc so had incorrectly thought that would mean I could have another. I'm glad I'm under CRP now.

Thanks all for your replies. I’m under Tommys and they have been quite cynical regarding immune issues - and did hint to me that it’s a money making scheme. Their advice was to keep trying and I’ll get there in the end!

All my basic bloods were okay but I have low AMH and seemingly don’t ovulate every month. But I have been pregnant three times in the last 24month and all have been missed miscarriages. The last two I saw heartbeats but lost them at around 8 weeks. I also caught Covid at the beginning of my last pregnancy, which I wonder if that might have effected things.

I have a DS who is nearly four, who we conceived with no prior miscarriages. I was on a strict anti-inflammatory diet at the time for a mystery inflammatory bladder condition. It’s all about putting the puzzle pieces together to try and find answers. That’s my main sign of an immune issue, that and the miscarriages after my son. Other than that I’m fit and well and all my bloods are fine.

it’s reassuring to hear good things about CRP. It can’t be all a money making scheme if people are having success after so much loss! X

Can anyone who is on CRP super complex or similar plan advise about stopping meds after BFN? I did a letrazole round and my official test day is tomorrow. Today's test is negative, so I'm fully expecting tomorrow's test to be negative too. When I did a FET through them I was pregnant for a while so then had to taper off the steroids after the Foetus stopped developing. Do I need to taper off or just stop (I think I read someone on here mention you don't need to if you aren't on them for long)? I'm on 25 pred. Also, should I stop cyclogest tomorrow too? I did email them this morning to ask but haven't had a response.

Morning and bump. Anyone know how to stop the pred correctly after BFN?

@seven201 you can just stop it cold turkey after BFN, you're not on it long enough to need tapering. Do you have all of your info sheets from the clinic with your plan details? It will tell you on there what to do if you get a BFN x

@Tgrf55 thank you. I'd only printed off pages 1 and 2 so had completely forgotten there are more pages that have info on. Thank you! I will find the document. Feel a bit of a plonker now!

Sorry me again - I had a Chicago NK cells test carried out in July via Serum IVF clinic and was told everything looked okay and I wouldn’t need steroids… I then went on and had another loss.

Has anyone else had okay results for a normal Chicago nk cells but still had things show up with Dr Shehata’s tests?

My results in the summer showed lymphocytopenia. NK cytotoxcity was at 39%. I don’t really understand the rest. Are these tests irrelevant to Dr Shehata?

Tia xx

@HopefulH from personal experience, I don’t think Serum do Chicago (unless they’re sending results overseas now) but their own version of it. If you got the results within a day or two, as I did, I suspect it’s still the latter. I’d personally repeat the tests here in the UK.

Do you know what your CD69 count was? What about your TNF alpha? I’ve read about cytotoxicity but these are the only two results of mine that showed slightly raised levels and I’m on steroids and intralipids. My clinic in London tested me. Not Dr Shehata. But with hindsight I may have gone to him. I’m actually having my remaining treatment with Dr Gorgy.

Have you been tested for an underlying bacterial infection? I had bacterial vaginosis, which needed antibiotics and my partner was also treated for it. So I think it’s worth exploring this as it can make a difference to sperm quality and womb environment. Just with you mentioning lymphocytopenia, which can raise chances of infection, I think?

How is everyone doing?

@Maxime34 how did your results appointment go?

I had my 10 week scan this morning and the baby looks good. Unfortunately she can still see the hematoma, though she said she’s not worried about it. I’m not bleeding from it anymore so hopefully that’s a positive sign.

Hope everyone else is ok xx

Good news @Ifitistobesaid that sounds very reassuring and brilliant to get to this milestone. My 10 week scan is just over two weeks away and that feels like forever. I think I’m going to try and have another next week just to offer me peace of mind. Though part of me quite likes being in a little bubble…

@MyEasterEggs I quite liked being in a bubble over the last couple of weeks and not having scans. But it did mean I was especially anxious going in today.

Great news @Ifitistobesaid ! Does she think the haematoma will eventually disappear on its own?

@Sezmarelda1 She said in most cases they resolve on their own. Although she did think it would have resolved by now and it hasn't so not totally reassured by that. The next scan is with Professor Akolekar so will be good to get his perspective on it.

@Ifitistobesaid I have had the same issue (sort of) I had my NHS 20 week scan this week and they said i had a hematoma. But Dr Edge and Professor Akolekar said that it is a placental lake which is normal. Im sure Professor Akolekar can put your mind at rest he is amazing!

Looking for a wee bit of advice - last week I tried to book in with Prof Akloekar but he isn’t available when I due to go back down so the nurse told me not to bother paying for the bloods because it’s the same ones that’s done on the NHS and if I’m not able to get the scan then it’s pointless as the scan is really the what people are looking for with him.
I had the Harmony bloods done at 10 weeks exactly (this is when Dr Edge told me I was to book in for). I’ve just had a call from the clinic to say there wasn’t enough DNA so they will need to retest.
I then obviously googled which was the worst thing to do.
I’ll pay again to retest but just feel like it’s another wait & I don’t have the scan with Prof Akloebar to give me any reassurance, and also another £450 🙈
Has anyone ever had this or know anyone that’s had this?

Hey guys ☺️ On my fourth month of pred/prog I have just found out I am pregnant. Going in for my first intralipid tomorrow. Never had one before, does anyone have any advice? Does it hurt?? Do you get side affects? I don't have a huge amount of hope right now as I am feeling mild cramp/ pulling sensations which Iv felt since 7dpo. I'm now 12dpo and although they haven't got worst, they haven't let up and I'm assuming it's the beginning of another miscarriage. I guess I'm hoping for the best but trying to mentally prepare for the worst! X

@LuckyNo14 the same happened to me. They used the 2nd vial, but the result was the same (which makes sense as it was taken at the same time). I was also very worried (it was my 6th pregnancy aged 44 after 5 losses). I then did some research and it can just happen, especially if you do it early (at 10 weeks). In my case my weight might have also been a factor (happens more often to overweight women). I did not repeat Harmony, but went for SAFE test (this is the test most likely to give results as it requires less fetal DNA). I used the Birth Company at Harley street, they were great. My 15 month old perfect result is sleeping upstairs whilst I'm writing this. Good luck and try not to worry. xx

Thank you so much @Wireless77 i have actually just been looking up the SAFE test instead. They want me to do a repeat tomorrow but I’ll only be 11+2 & don’t want to keep spending money for it to come back the same. I’ll speak to Dr Edge tomorrow & see what she suggest. I live so far from from clinic that it wouldn’t be positive for me to go down again before 16 weeks (im actually looking forward to the break away from it😂)
I’m so glad yours was low risk & congratulations on your baby ❤️ I got such a fright when I first googled but diving deeper I seen there was loads of places advising not to do Harmony until 12 weeks minimum. Thank you so much for the message ❤️

@LuckyNo14 SAFE gave me results before 12 weeks (maybe between 11 and 12 weeks). I think Harmony would have not worked for me. I think SAFE is also more reliable based on my research. I certainly recommend that one. xx