Immune/NK issues - aka Pred Thread no. 22!

[HappyApple05]

Helllooooo dearies

Opening this new thread looking for a light in the tunnel during my journey towards conception. Would be nice to walk along with people in the same journey. To cut my story short, 3 miscarriages and referred to Mr.S, diagnosed with high NK cells and lupus positive, already on levothyroxine. After 2 weeks of staring at the med pack, I have now finally started on Aspirin, Vit D and Pregnacare plus. Awaiting Ovulation to start on Pred protocol.

Miscarriage history:

1. July 2017 - In my 12 week scan, found foetus with no hb (6 weeks foetus size), devastated! Had severe morning sickness, didn't predict anything negative. Took my son (6 years then) to the scan planning to break the surprise where he could see his sibling in scan.. We all broke down, opted d&c

1. March 2018 - started bleeding in 6 weeks and miscarried naturally.

1. July 2018 - spotted in 6 weeks, scan at EPU no pole, returned when 9 weeks along, still nothing, opted d&c

Bought the ovu predictor kit for the first time, counting days to use it. Any of you in the same position? Would be great to hear your stories and cheer each other up towards the destination. Previous threads were beautiful, so supportive but sadly the latest post was in Sep 2017. So most of them would have crossed the bridge. Decided to start on a fresh thread.. So here we are....

Looking forward to catching up... Take care you guys.... Plenty of baby dust to everyone

Unrelated to anything that has gone before but we are 23 messages away from being thrown off here. In a piece of beautiful symmetry we need to set up the pred thread 23!

And I think @Chickjen should be the one to do it xx

@zoe16 I think it used to be progesterone from bfp but then the consensus moved to after O. A lady on here back in Jan/Feb went to a hospital appt and was told it had changed to after O. Progesterone does help thicken the lining which would help with implantation.
For the pred, the way MrS described it to me was the NK cells are not sitting and waiting for me to get a bfp before they attack, which does make a lot of sense when you think of it that way.
I really hope I've read into this wrong but did you get bad news at your scan?

@MrsMargot good luck today. My NHS appt was a different hospital and they do vary, but they went through my history, took blood for testing, and offered a hysteroscopy (not done that day) but they did not cover immune NK issues at all and I did not know about them at that time to ask. But like I say, it does really vary and some hospitals test as standard.

@EmsIMO I have only been on the pred around 4/5 cycles but I'm sure I read MrS suggests a break for a month after around 6. I don't think you have to stop trying just a break from the pred as it has built up in your system.

@MairMum18 I have been pretty lax with the aspirin and when I do take it I seem to notice more spotting. Assuming you are taking it 'just in case' and not for a clotting problem I would be tempted to stop it for a few days and see if things settle down.

Haha @KittyKatSmile I've had my eye on the counter too! I'm happy to start a new thread (when I'm not on my phone) but why me specifically? 😂

@Chickjen because you're one of the old guard and because of the brilliant news you've just had (I'm touching wood as I write that but today, you are pregnant!)

@Chickjen thank you very much! I am really hoping they cover some of the more specialised tests. I did NK Cells privately last year but I was told that the results vary from lab to lab (is that even possible?!) and I would like them done again. I am guessing Dr S will request them again next month so we shall see. I am also hoping for a complete Thromboplelia panel. There is DVT in my family and I know I have an MTHFR mutation. I have done some privately but there is always something missing. I have prepared a long complex spreadsheet with anything related for the poor doctor that will see us! 😬😇😂

Hi all,

I am fuming with my GP. I was sent to the reproductive Gynecology Clinic at Guy’s not the recurrent miscarriage clinic!!! We were waiting for 2 hours only to be told by the doctor “But you do not have an issue with getting pregnant so I do not know why your GP sent you here”. I am so upset! The only good think was that she promised to sent a letter to my GP spelling out what he has to do. I cannot believe we have lost so much time to be told we were sent to the wrong clinic... I am really going to cry.

Hi,

I am so so sorry to jump on this thread but wondered if anyone could help here? I have heard from lots of people about Dr S and wondered if he was able to help with cps? I am not sure if they "count" as miscarriages? I have also had 1 failed ivf (soon to be 2!!). If anyone is able to offer advice or help, that would be great. There are just SO many positive stories on this thread, I would love to one day be one too!! I like the thought of 'Dr S' as apparently he lets you try naturally and you can use your own IVF clinic with his plan if needs be. Obviously if there are other (similar) consultants out there I would love to know about them too...

Thank you!

Thank you for the replies @Chickjen I think I'll take your advice and not take it, well I'll take it alongside the prednisolone instead so that it doesn't affect my periods as much.

@Chickjen thanks for explaining. Perhaps that’s the reason my doctor said after bfp because he doesn’t think I need it to help with implantation but given my history I think I will use from O going forward. Can’t hurt right?! I definitely agree with taking the pred right after O as bfp may be too late in our case.
Yes sadly this one was not meant to be. I’m waiting to miscarry but I have hope that my new treatment will lead to a healthy pregnancy.

@MrsMargot my thrombophilia panel came back normal but I’m convinced I have clotting issues during pregnancy as DVT runs in my family too. I also read that the NK cells can cause clotting issues too during pregnancy.
Sorry to hear you had such a disappointing day that was a huge mistake on his part, especially given the waiting time for these clinics. Can he expedite your appointment for the mc clinic since it was his mistake?

Hi everyone, I just wanted to introduce myself and hopefully ask for some advice if you don't mind.

I have been lurking for a while (previously back in 2015/2016 after I had two miscarriages (early at 6/7 weeks) and then I went on to have my daughter in Nov 2016 after being put on 20mg pred, progesterone, high dose folic acid and clexane (I had the uterine biopsy by Mr Akande in Bristol and had high levels of NK cells)).

Fast forward trying again for number 2 and I have had two more miscarriages. I was on 10mg of pred for one and then last time 20mg pred but failed again. Both the last two miscarriages were tested and came back normal. So, I saw Mr Shehata in July as I wanted to get more extensive tests as I felt I couldn't do the same treatment plan again and all those tests came back normal! He has put me on the complex plan, so 25mg pred, aspirin, prog. Obviously the difference is that it's from ovulation whereas previously I have taken from bfp (tested early).

My NHS consultant has said I'm tricky and doesn't know what to do with me, given the last 2 pregnancies were chromosomally normal. I had another biopsy and get the results next week and he has said he is going to prescribe me hydroxychlorinquine, as well as aspirin and steroids. He is VERY anti taking the steroids from ovulation so it would be from bfp. He hasn't said what dose of hydroxy yet.

I don't really know what to do - my gut is saying I should try the hydroxy as we do not get pregnant quickly (ranges from 3 months to 10 months) so it is likely that I would be on them for quite a while. Also it's something different and I know Mr S adds it in.

I can see that some of you are on the hydroxy - would you mind giving me your experiences? Do you also take the steroids from ovulation each month? What dose are you on of the hydroxy?

I'm trying to be super healthy, reduced my gluten, started back up my acupuncture, but it does wear me down!

Any help and thoughts would be so gratefully received. Thank you x

@mezgaski welcome! Dr S added hydroxy into my treatment plan recently following a miscarriage on his high plan. I take 2x 200mg tablets each lunch time and haven’t had any side effects. Dr S requires you to take them everyday for 6-8 weeks before trying to get pregnant and all the way up to 16 weeks of pregnancy so I’m unsure how it’ll work with your NHS consultant if he just wants you to take them from a BFP.
Vitamins & aspirin are also everyday tablets with

One thing that definitely sets Dr S apart from others is the steroids from ovulation and not just the BFP. There’s been a few comments about this recently if you scroll up a little xx

@mezgaski sorry that was meant to say with... Pred and progesterone from ovulation ☺️

@zoe16 im so sorry to hear that lovely :( you sound very brave and strong, I hope that's the case, we are here for you if you need to let off steam [big hugs]
@MrsMargot how incredibly annoying! I thought my NHS appt was bad (bored and uninterested) but didn't want to put you off, but at least they did SOMETHING! I do hope @zoe16 is right and they can rush you through again. Will you still go to MrS at the end of the month?
Welcome @Zest11 yes MrS certainly counts chemicals. He found some kind of immune response I have that particularly can cause chemicals. Where are you based? I have heard good things about Coventry too.
And welcome too @mezgaski, I don't have experience of hydroxy I'm afraid but wanted to say hi.
I have created a pred thread 23! I hope I have tagged everyone. I'm really very sorry if I missed anyone, there has been a lot of activity recently, which is excellent, but does make it hard to keep track!
Can I suggest we switch over and leave a few spaces here just in case ?

@zoe16 I am so sorry... rubbish news... yes definitely let off steam. We are here for you. ❤️
In terms of my GP I am really hoping he can do this. I called the practice this morning and they were very apologetic. (I was 😤). I am seeing the GP next Friday.

@@Chickjen I really hope they can expedite it. I was waiting 4 months for the wrong referral!! I have to say the doc I saw there was very understanding and she reviewed my history anyway. She said that I definitely need specialist care (no shit Sherlock) and that she will send a letter to recommend I go to the miscarriage clinic ASAP. By the way, I asked about any blood tests they could do. They did a repeat APS panel which I guess it is something. I wanted an NK panel and the Thrombophelia. She said that the miscarriage clinic does Thrombophelia and that they do not believe in NK. Not only that, she let slip that a certain doctor pushes them too much and it is absolutely wrong because there is no medical evidence. I kept my mouth shut 🤐. What would I say?! That I am due to see this certain doctor at the end of the month and that hundreds of women are evidence?! And yes of course I am going. No doubt about that.

@mezgaski Welcome! I know nothing about hydroxy (yet) but there are many knowledgeable ladies in here!

Hi ladies,
I’m new and hoping it’s ok to join here.
A bit about me, 38 (not far off 39) and 3 mcs in the last 10 months, the last was a MMC in July.
I’ve been to see Dr S ( self referred, and travelling from Scotland just to add to the cost 😕).
I don’t have high levels of NK but cytotoxicity was high, has anyone else had this?

Plus I have diagnosis of APS but was on aspirin and heparin for that last time and it didn’t work. I’m trying to get OH to do the DNA frag sperm test.
I’ve been put on the complex plan, haven’t started TTC again yet but hoping to soon, it’s so scary.... xx

Hi @Eeviee. Welcome. We've moved over to thread 23 now as we've run out of space here. Search for that and come and join us all over there x