TTC or pregnancy on prednisolone or similar part 11

[Buzzybee123]

This is a positive thread for all those diagnosed with High or Very High NK Cells and looking to start TTC or already pregnant on Prednisolone and/or Intralipid treatment.

Newcomers very much welcome!

Accidental I am sorry to hear your news. I can only hope that stabilising the lupus takes a shorter time than you fear. Of course your ds will need a healthy mum more than he needs a sibling, just really unfair you cannot at the moment have both.
Free, I'm really excited to hear the news re Prof Q. Maybe other women won't find it so hard to get anyone to prescribe them steroids in the future.
Duggs, regarding successful protocol - I had steroids from ov, aspirin all the time, progesterone from bfp, and a vitamin regime including high strength folic acid, D3, magnesium, veggie omega 3, selenium, co-enzyme q10 and a multivitamin.

Thanks iggi. Is strange - Louise said I should get the NK cells results by end of week so hoping today or tomorrow. I really want to know what went wrong with this 6th pregnancy. I'm hoping for high levels so I can try hydroxy properly as that seems to be the only key thing missing. If not then all pressure is on the chromosomal testing of the fetus and was only 7mm so not sure what they can get from that. It might be inconclusive. If both come back ok then we are really F@@£ed as no idea what to do next ? Egg donor, sperm donor, surrogacy or adoption. Fekk.

duggs my foetus was only 5mm and they got (normal) chromosomes from that. Knowing that was the trigger to stop half-believing the "unlucky" crap and get the NK tests done. Hope the results are back soon.

Hi bakintins thanks for letting me know. Did it take about 6 weeks for results to come back? Have you had any mc on the nk cells treatment ?

Hi everyone

Duggs so sorry to hear your news, just awful. Hope you get somewhere with test results etc.

Accidental really sorry to hear your news too that you're unable to try again naturally, must be devastating to hear that news.

I'm also at the point where I don't know whether to try again. Have had 7 early mcs, lost Oscar at 5 months old and lost Joey a month ago at 5 months pregnant. My head is saying don't ttc again, and my heart is saying go on, you have one more try in you. My dh would stop now and try for surrogacy, we've been looking into it. Extremely expensive, but at the moment it seems more of a definite way of getting a baby here (if we can borrow the money!). You all know the desperate desire to have a take home baby, and mine is stronger than ever after so much heartbreak, but I'm obviously terrified too...

I really don't think I would have got to 20 weeks without Mr Shehata's treatment plan:

40mg pred, hydroxy, progesterone, Clexane, vit D3, pregnancy vitamins with fish oil (I use Lamberts StrongStart on the advice of a reflexologist), intralipids every 4 weeks until 32 weeks (if I got that far)

Does anyone have stupid questions thrown at them in the midst of their anguish or am I just becoming a bitter old cow? I'm fed up of people saying things like "do you think you can't carry boys?", "I know someone who had high nk cells which only attacked boy pregnancies, I'll look into it for you", "have you thought about ivf?", "have you thought about seeing a fertility specialist?", "have you thought about going through the epu as they put ladies on aspirin, pessaries etc?" (last three questions were from my counsellor at my first counselling session at the hospital yesterday, not sure I'm going back), "I'll speak to my friend, she's a midwife at the hospital in the fertility department" etc etc. It makes me dread going back to work so much, I work in a big open plan office with about 800 people there and I just know I'm going to have other unwanted suggestions and advice. I feel like saying "whatever you suggest, I will have already thought of it", or maybe just "f*ck off and leave me alone". I think I know the answer, yes I am a bitter old cow at the moment!! I think I'm doing dh's head in, he wants to come home to his wife who he married 3 years ago but he comes home to a grumpy, moaning woman who is constantly grieving...

Has anyone else been to counselling? Is it normal for them to throw random suggestions at you which wind you up? I thought it was for emotional support but I don't feel like I got it, I just came out more upset than when I went in!

Waves to all x

Mollie sorry you didn't get support in your sessions. I have had counselling (lots of it!) though not with hospital, through Sands. It was great. I did talk about treatments etc, but when I wanted to, it was led by me.
I think people say the daft stuff because a) they do wish they could help b) they want some kind of answer for what happened and c) if there's an answer it might mean they are 'safe' from it ever happening to them.

Mollie, it sounds as if you need a new counsellor. I find they vary so much and I'm sure there's someone better. As to the insensitive comments, I think sometimes people just find the subject so overwhelming and uncomfortable that they just want to do something to make things right somehow, and to make the subject go away, so they desperately think of some advice. That will fix it! Instead of just listening. And then other people are just morons!
If you can afford it, surrogacy does seems the perfect solution. If it works, of course; no guarantees. Someone did offer to do it for me once, and that is the nicest thing anyone has ever said to me, but she's the last person who could as she suffers dreadfully in pregnancy and had pre-eclampsia last time. And even if you were lucky enough to find someone who would do it without wanting to be being paid, it would still be so expensive. But so much of the anxiety would be lifted. Although to be replaced with different anxieties, no doubt!

Ladies, my husband just sent this through, wanted to share: www.bbc.co.uk/news/health-24047842. Prof Brosens has been working on this with Prof Quenby.
Mollie, that is absolutely appalling - is this counselling through the hospital? If so they absolutely need to know about what has been said to you because it's unacceptable for their team to be so uninformed. Sending you so many positive thoughts - you are being so strong and amazing. xxx

Thanks for the link - here's one for the abstract of their article (I'd have to subscribe to see full thing)
jcem.endojournals.org/content/early/2013/09/05/jc.2013-1977.abstract

Thanks for those links, ladies. Interesting though that they are testing uNK cells by biopsy, not by the blood test that is routinely used by Mr S and others. I've read elsewhere that circulating NK cells do not necessarily tally with uterine NK cell numbers and therefore maybe meaningless.

Yes. Dr g does both. Apparently 1 in 3 women have raised NK cells at some point is v common.

And did yours tally, Duggs?

No my nk cells test with dr Gorgy last may came back normal.
They were the extensive Chicago tests so much more in depth than the dr s tests. Dr s test was aug 2011
I had raised levels but not raised numbers. Then the following may after not getting pregnant I did iui at NLC which failed then IVF with CGH testing - full dr s immune support 40mg pred, intrallipids,
Clexane, cyclogest and 2 chromosonally normal embryos put back but mc at 5 wks. Dr S didn't have an explanation at the time but now I think was just a failed IVF cycle really. I went to dr g for re tests and those showed my NK levels at normal levels. So he didn't suggest uterine testing because he was concerntrating on hidden infections and the sperm of DH which were of concern. I'm really thinking this last pregnancy was chromosonal as the pregnancy was smaller than my dates all along. Hopefully I'll get confirmation. The treatment for uterine nk cells and blood nk cells isn't different so I don't suppose it really matters. I've started on hydroxy today so next pregnancy I will just chuck the steroids and intrallipids at it for good measure and hope there is a decent egg/ sperm somewhere between us.

mollie I too have had lots of counselling. IME, the medical team can't share info with the counsellor and vice versa, unless you specifically ask for this. So, all her info will be based on what you choose to tell her. I am a bit stunned by her proffering treatment plans. Def not her remit imo.
I saw a maternity counsellor in my hospital who I can not speak of highly enough. If you don't get that vibe, please find a different one. I think it's important you set out what you want to achieve during counselling and for me both looking back on what has happened and looking at how to move forward with all the baggage. We have looked at perhaps why I make decisions I do, (some childhood stuff) and why I handle things the way I do. Explored life with another baby/without etc. I share this all as food for thought. You may choose to see a non maternity counsellor, as I don't think counselling necessarily needs to be narrowed to your 'maternal' experience.
I know you know this already but counselling is not a magic wand and can be really hard work. But if the formula is right, I think it can be fantastic.
Take care, my lovely. It must be such a tough time x

Duggs it is only my experience but I have had pgs when measurements at scan were a bit behind, and neither baby made it sadly - only had tests with one but there was a trisomy found. With ds2 he always measured perfectly for dates. However I know there are women on mumsnet who have had low measurements and a perfectly fine pregnancy. I think we tend to be so sure of our dates though, maybe that makes a difference.

Yes I knew when I ovulated because of clear blue smiley face and had bfp at 10 dpo and I was measuring behind from the first scan. I think this might be a chromosonal thing as I was on pred, clexane, intrallipids, cyclogest. We will hopefully see but would help us to carry on if so. Thanks honey for sharing x

duggs I got the results in 4 weeks. I've only just had the NK cells diagnosis so no pregnancies on treatment as yet. I saw Prof Q and had the uterine biopsies, my NK cells were 16% and

mollie it is astounding what people will say to you, although they mean well a simple 'I am so sorry' goes along way. You need to contact your Occ health dept and your manager, they should be talking to your colleagues and advising them to give you space when you return to work, that is what my occ health suggested, they also said to pop into work before going back so people could say sorry etc it also meant I could leave when I wanted and have a good cry which I did, it also meant that when I went back there would be less anxiety of the questions and comments, I wasn't too sure about this but it did help, also I noticed that where I work people were sympathetic but were also wrapped up their own worlds.

I agree you need a new counsellor, you have to feel comfortable talking to you, mine was through work and was great, she mainly listened and very rarely asked questions, she suggested different view points on how I was feeling, but in a positive way, she was never dismissive of my grief. I did in the end have life coaching which was totally amazing and changed my life around. It sounds sort of similar to clabbages experiences

Thanks for the replies re the counselling, really helpful. Its really hard to find a counsellor, they keep leaving the health service and not being replaced so this is the only option. I might go one more time and set out what I want from the session as clabbage suggested and see what happens. Obviously there is the option of private counselling but funds are limited and needed for other things ie trying to have a family.

Thanks buzzy, I think I might go into work for an hour or so one day so that the return to work isn't filled with nerves and dread. Your counsellor sounded really good.

brown that is so lovely of your friend to offer to be a surrogate for you, even though it wasn't an option for you.

Just to say Mollie that Sands only asked for donations, so not prohibitive price wise. In some areas I think the Miscarriage Association might do it too. I found asking for counselling via GP got me nowhere, sadly.

Thanks Iggi, I didn't know sands did counselling & I can't see it on the website but will have another look. My gp was rubbish too. My work have a counsellor but he's a bloke, sexist I know but I don't feel like he understands my issues!

Hoping now it isn't just my local area one that offers that.. Worth contacting them anyway.

From looking on sands they say to contact your gp or cruse but you can contact your local group and a befriender can come to your home. I could ring them anyway and find out, cheers.

My DH is a counsellor Mollie and says yours sounded very unprofessional. Hope you find a good one xxxx

Just took my last Pred. Freedom!!!!! :)

Mollie the counselling my GP referred me to after my dad died was less than useless. Can I suggest a totally different angle to think about - hypnotherapy.