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

@KittyKatSmile Are you having the counselling at ZW? Half an hour counselling is included in their standard IVF packages, which I never took them up on but am now wondering if I should! How are you finding the clinic overall? For me the most annoying thing about them is that they only do 9-5, so no early scans and I had to keep skiving off work. I came to the conclusion that IVF treatment could be a full time job, but then without my current job we wouldn't be able to pay for it!

I'm feeling a bit better about myself - yoga 2/3 times a week, body pump at the weekends, and a bit of calorie counting has meant that I've already lost half a stone! Still got quite a way to go but it's a start

@ginandtonicformeplease, yes counselling at ZW, which they are insisting on, rather than being through choice. I know what you mean about their hours; it's very annoying but then I don't care much about skiving off work really as I can't concentrate much anyway...

That is amazing news about your weight loss; well done! You will start feeling so much better in yourself. I haven't dared to weigh myself recently although I lost 2kg in the month after the latest miscarriage. That felt like sort of sad weight loss to me!

Went to my acupuncturist today who was brilliant, as always. She is so supportive and asked if I was going on holiday. I told her to not get me started on my 'will they won't they' holiday with my mum

Hope you ladies are all doing well. News from pregnant ladies please!!

Hi everyone

Hope you don't mind me joining as I need a little advice.

I have had 4 miscarriages in the last year two of which got to 5/6 weeks and two getting to 8.5 weeks with healthy heartbeats. I have had a couple of standard tests on the nhs and have booked in with Dr Shehata mid June.

My only concern is that does he only primarily focus on immune problems? I've read a lot on that people with the immune problem that's he's treated have never got over 6 weeks and never seen a heartbeat and I'm just wondering if mine are more chromosome related and would I benefit more going elsewhere for karyotyping? Or is this something he will look at too?

I'm just concerned about spending pointless amounts of money and travelling to London if he's going to focus on the wrong thing.

Thank you x

Hi @Pop1234 I have had miscarriages after seeing heartbeats at 6 and 8 weeks too, and my karyotype tests were normal. For what it's worth I think you are starting in the right place because at least immune problems are treatable whereas chromosomes aren't. Although admittedly I am only just starting out with MrS too so no success story for me yet.
Im sorry you find yourself here but you have come to the right place, I'm sure others here will have better advice than me ☺️

@Chickjen thank you. Fingers crossed it isn't chromosomes, as that terrified me.

Have you had your first appointment with Mr S yet?

@Pop1234 yes I've had the appointment and blood tests and have a treatment plan which I have just started. It involves some injections to lower TNF alpha cells, then I go back for a repeat blood test to check it has worked and if so can start TTC again 😀
Make sure you take any previous blood test results with you or email them over in advance, he will consider them so you don't need to pay for anything unnecessarily. Some people find him abrupt but I found it such a relief to hear someone say 'look there's a problem, this is what we do to fix it' instead of all the 'we can't find anything just try again' I experienced before.
Any questions or concerns just fire away, someone here is bound to know 😀

8 week scan today measuring 8+5, all looking good x

@DaniMERL great news on your scan x
I've started bleeding at 6 weeks, just like my previous two mcs. Not sure where to go from here if this turns into another miscarriage as all tests came back normal although haven't had karyotyping and mthfr and I've been on Dr Shehata's protocol (although saw the clinic as an NHS patient so no intras). Any advice? X

Oh @chilliandlime so sorry to hear.
It might be nothing, will you get chance to have scan to check? Of course it’s easy for him to put losses down to chromosomal issues rather than his failed protocol. Remind me, what meds are you on and have you already had any losses on his programme?
Take care xxxx

@Chilliandlime so sorry to hear that. What are you going to do? Can you go to your local Early Pregnancy Unit and get a scan? Sending you all best wishes. Thinking of you.

@Chilliandlime so sorry to hear that. What are you going to do? Can you go to your local Early Pregnancy Unit and get a scan? Sending you all best wishes. Thinking of you.

Thank you, it's hard to get an emergency scan at my epu so I might try and go to Kings tomorrow morning as I think they have a walk in epu. Last time I spent this evening in a&e and then went back on the Saturday night for repeat bloods. Think I will wait it out until tomorrow morning as horrible spending the evening in a&e. I'm on the 25mg pred, Cyclogest, aspirin (although started that from bfp), Ranitidine and the vitamins. This is my first time on the programme, got referred after 2 losses xx

@chilliandlime the clinic usually advise stopping the aspirin and doubling the progesterone if you bleed.

And I have a friend who bled at 5.5 weeks and is now 20 weeks. Mr S identified the cause at the 6 wk scan.

And if things aren’t okay don’t lose hope. My first pregnancy failed on the plan. I had no bleeding but my 6 week scan showed literally nothing in the uterus and I then started bleeding 2 days later.
He then added the Hydroxy and I had that weird chemical and then this hopefully success. I know so many who have had success with the Hydroxy and also so many who have one loss and then success with Mr s once he’s tinkered with the meds.

My EPU are also super awkward but I have heard good things about the Kings walk-in.

I have my fingers crossed for you xx

Thank you, I really appreciate the advice @DaniMERL. I will add a second Cyclogest in the morning and stop the aspirin. I'm not sure whether he will offer the hydroxy for NHS patients or not so may have to switch to private and also to get a quicker appointment as had to wait 4 months for the NHS one (but was dealing with Ashermans so couldn't ttc til then anyway). Also got the Ashermans nightmare to worry about and it coming back, needing more surgery...I know it's jumping the gun as this hasn't been confirmed but I just feel like there has to be a cause for 3 happening at exactly the same time. Hopefully will be able to get into Kings in the morning as hate the limbo xx

Fingers crossed. I had 5 D&Cs previously and was very anxious about ashermans for a long time. They scraped the lining v thin. I always seemed to need surgery as products stuck fast but the loss I had on the programme just faded away naturally which was a small relief. Not sure why that would be.
Keep us posted and praying for good news today x

Thank you @DaniMERL, really appreciate your replies. Kings were good this morning, didn't have to wait too long - think we were lucky as it was quite quiet this morning. Bleeding has pretty much stopped today whereas last time it got worse. Saw the heartbeat and size was right for the dates and she found a small subchorionic haematoma which probably caused the bleed. Feeling mildly crampy and holding my breath for any more bleeding. I had schs with previous mcs so trying not to get my hopes up too much whilst still trying to stay positive. Will keep you posted! Will hold off the aspirin for now and hope it reabsorbs. Frustrating that schs seem to be such a mystery! X

@chilliamdlime that’s great news! That’s exactly what the friend had, who I mentioned.
Now that you have a known cause I would still check with the clinic about the aspirin as they may say it’s more harmful to stop taking it? I just don’t want to be responsible for that decision.
Take care and rest up x

My NK killer cell count was the highest my clinic had ever seen. Plus I had high thyroid antibodies and so my consultant was positive the protocol would help me, and he was right. Though I also have a clotting disorder and the aspirin / heparin combination might have played it’s part too. As did treating my thyroid condition.

Thanks @DaniMERL, I did a bit of research online and seemed to be the recommended approach. I also emailed the rmc nurse at Dr S's clinic and got an out of office, which always seems to be the case every few weeks! I will call the epu in case and hope I can catch someone x

@Chilliandlime thinking of you and hoping you're ok x

Thanks @KittyKatSmile, no more bleeding since Thursday night yet and took it easy over the bank holiday weekend so really hoping it's been reabsorbed. 7 week scan at epu is on Thursday afternoon so fingers crossed xx

@Chilliandlime, I am so happy to hear that. Bleeding is so terrifying but so common for seemingly hundreds of reasons! Keeping my fingers crossed for you. Good luck x

My Dr has mentioned that I would start taking pred once I've had a positive pregnancy test. Is this your experience as well or did you take earlier on in your cycle eg around implantation time? (I know for most you won't know exactly when this is).

@Maranello4 hm, contentious one. Mr S is a very strong advocate of taking it from ovulation (as opposed to implantation). It gave me terrible side effects and I struggled to conceive when I was doing that...

Hi guys
Anyone take gcsf/neupogen with mr shehata? It so how often and when did you start
Thanks