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Immune/Natural Killer Cell treatment for those ttc or pregnant. (AKA the 19th pred thread!)

999 replies

Seekingmiracles · 13/05/2016 20:48

The new thread for anyone ttc or pregnant with immune issues or natural killer issues. Welcome ladies! Smile

OP posts:
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Rosa27 · 13/01/2017 17:32

Hi everyone.. So quick summary for those who don't know me .. I'm 40 and after 6 years of infertility, 3 miscarriages (2 were missed at 3 months) and a year of treatment with Mr S on the complex programme for high nk cells I had a healthy wee boy who is now 14 months :)
I had one period after stopping BF and now it seems I could be pregnant but I'm so worried ... Was at the hospital today and they did an internal scan and couldn't see anything except a small sac and said it could be too early .. But do you think it's a bad sign? It's not really possible I am any earlier than 5 weeks pregnant and I'd thought I was exactly 6 (the digital test says 3+ weeks post ovulation, and I would have conceived sometime shortly after 18th December). I had a hcg blood test taken at today and thy said they would call me in for another on Sunday. I'm so worried ... At 6 weeks last time we saw a heartbeat ...
To make it all worse, I'd had negative results 2 weeks ago so been on no medication and was going to try with just pred, cyclogest and vits this time as live north and with a wee one it is just too much to do regular Surrey visits. What if my body has already done the damage and/ or it is a blighted ovum? :( And I got back to work after mat leave next week ... Stress levels peaking!! Any good news stories after such a scenario very welcome and so sorry for be long post. I will read and post more to others later when my baba in bed ..

Rosa27 · 13/01/2017 18:35

Ok sort of caught up now! Hi to everyone- especially Snoopy (big congratulations - SO happy for you!!) also to Sunny and seeking and Tumtimes.. Few new names and I will try learn more ASAP. Sorry I don't know more about the mthfr issue.
Wishing the best year ever for everyone - a year of hope ahead when hopefully dreams will come true xxx

Snoopysimaginaryfriend · 13/01/2017 18:47

Aw rosa congratulations!

I think with early scans it's so difficult, it's a matter of millimetres. I'm personally not a fan of them because I always want a definitive answer. Are you sure of ovulation dates etc? It's good that they took hcg bloods though as that will help give a clearer picture as well. I know we're all prone to anxiety but try to relax and look after yourself until you get those second blood results.

Oh and with my scan my scan last week he had me tilting my pelvis and putting my fists under my back to try and get a better view with the internal. At six weeks it really is so tiny.

Rosa27 · 13/01/2017 19:09

Thanks Snoopy but I'm definitely not celebrating .. Feel so scared it will be bad news. It was a very tiny sac with nothing in it... Anyway I must try to hope .. Hate this waiting game!

Snoopysimaginaryfriend · 13/01/2017 20:24

I know that feeling rosa. It's so scary and I genuinely thought that now I have edie any subsequent pregnancy would be happier, more hopeful. But it isn't. I am still absolutely petrified and counting the days until the next scan.

Have you started the pred and cyclogest and do you have a supportive epu?

Rosa27 · 13/01/2017 21:04

Exactly .. Every pregnancy carries its risks and this time I've less medication and older age against me. But I tell you what, I do, every second, still feel soooo grateful for my baby. He was one success but there were many heartaches so you just feel the odds stacked against you. My physical and emotional stamina is weak.. I'm terrified. I will know Monday if can keep hoping, and then end of next week maybe another scan.
I only started last night/ this morning with meds.. Possibly 3 weeks late.. I must have tested too early to get negatives before ..

Rosa27 · 14/01/2017 15:53

So my HCG was 2200 on Friday when I thought I'd be 6 weeks but must be at least 5. The sac was so tiny on the scan and central instead of off centre as it should be so been told it's a very slim chance .. More bloods tomorrow morning. Feel awful and now have opposite of constipation which I think is another sign of impending miscarriage ... Unless pred or cyclogest can have that affect at the start. Can't remember. Bit of lower back pain too. Can't believe I return from mat leave next week.. Awful timing ... Anyway just wanted to update. Hoping for better news from others and hope ok I've just jumped back in with my drama .. Maybe at 40 I should just be happy with the one (he really is perfect) and accept there are too many risks now..

Snoopysimaginaryfriend · 14/01/2017 17:05

rosa 40 is not old! And drama is what this thread is for, look at my histrionics in the last couple of weeks Blush

The hcg level is good and would the sac had been central because it's implanted in the back or front of your womb rather than the side? Sorry if that sounds silly. With edie I had an anterior placenta so she implanted at the front of my womb.

Oh and I had awful diarrhoea just before I got my bfp to the point that (this is so embarrassing and tmi) I nearly had an accident walking the dog. That's why I presumed I was getting norovirus because then the nausea starting. And i was taking handfuls of Imodium Confused

Rosa27 · 14/01/2017 18:21

Thanks Snoopy - appreciate a friendly reply as feeling so low. Only my dh knows and he's great but can't really appreciate how this affects us so deeply and every level. He says we should focus on how lucky we are with our son - true- but I'm really struggling with fact I could have thrown more immune therapy at this pregnancy if only I'd known.. I should have kept doing preg tests until my period came.
It doesn't sound like the sac implanted or survived. Lower back pain isn't promising either. Will know more this time tomorrow. Thanks so much for being there .. Will pray for your recent luck! X

Snoopysimaginaryfriend · 15/01/2017 11:21

My DH is always one of those 'cautiously optimistic' people which is very irritating when I feel so hopeless and I always end up thinking 'of course you're optimistic. It won't be you in pain and bleeding. It's not your career that has suffered'. Yet that's not fair either because there is absolutely nothing he can say or do that will change what is going to happen.

How are you feeling today?

Snoopysimaginaryfriend · 15/01/2017 11:26

mochita did you manage to get hold of another pregnancy test?!

Rosa27 · 15/01/2017 12:58

So my HCG went from 2200 to 3500 in 46 hours. Not good I'm told. But still need to wait until Mon when dr back to be told ok to stop meds and plan what to do. So crap. I'm meant to be returning to work. Not sure what to do on any level. Just feel so low :(

Tumtimes1 · 15/01/2017 13:07

Hi Rosa. i'm sending You my thoughts and keeping an open mind as at least the hcg has increased. Plus I had diarrhoea throughout my second pregnancy and constipation in the first. Please keep us updated and sending you love x

Rosa27 · 15/01/2017 13:26

Thanks Tumtimes. It's really not looking good at all but I can't help clinging on to my 1% chance ...
The doctors said keep taking the meds until we scan you again on Tues. oh dear. Just a horrible waiting game with such a bleak prospect. Thanks for the message - it does really help xx

mochita1108 · 15/01/2017 13:30

Rosa, sorry to hear what your are going thorough is hard I know, no matter how much we try to feel and think positive we just can't. Sending you lots of hugs and good vibes your way. I am still waiting to get pregnant :-( Snoopy it looks like I am not pregnant, I went to boots to get hold of another test yesterday and also talked to the pharmacist, she told me that after you get your results within the recommended time you shouldn't look at them again because it could change due to many factors, in any case I took another one just in case and came negative and today I did get my period .. so weird because I had and felt different this time but maybe it was just me thinking or hoping I was :-( this is my second months on the treatment and I was hoping it would be it, a little disappointed of course but at least is not another miscarriage .. I fear that the most. Funny how when I was not thinking about getting pregnant or treatment I easily felt pregnant now that I am specifically targeting so that it happens it does not, I am still hopeful just gutted need to wait a couple of weeks now.. Sad

Snoopysimaginaryfriend · 15/01/2017 19:46

mochita I'm sorry. It's so hard because the pred and the cyclogest can make you feel symptoms. It's heartbreaking. Fingers crossed for better luck this cycle. Will you try the natural folic acid do you think?

Rosa27 · 15/01/2017 19:57

Mochita .. Sorry you're on this rollercoaster. Thanks for your kind words earlier. I must admit I'm struggling with my limbo too- not knowing when and how to manage.
I remember the acute disappointment every month before I had my precious pred baby just over a year ago. I really didn't think it would ever happen- and we were tracking everything and leaving nothing to chance. I was even doing ovulation induction in the end - I'd actually decided to try IVF with a bioculture around the embryo and was convinced that was my last and only shot so had mentally given up in the month I must hAve conceived. So I do always wonder about the affect all the mental stress and worrying has on conception. I'm sure you're doing all you can and it really does work out for most people somehow sometime.. So it is really important to try enjoy life along the way.. I felt I put everything on hold and do regret that now.. Easy to say in hindsight though. We had 6 years of infertility, 3 miscarriages and 8 months of drug treatment before falling pregnant with our miracle baby. I've heard so much worse though and I don't feel unlucky anymore even as I sit here preparing myself for another miscarriage. Sorry I'm rambling .. I just want to encourage you to stay positive and do your best to have faith so that you relax as much as is possible - that way it might actually help you enjoy life along the way as well as conceive. I do know it's not that easy though. Maybe a cheeky drink here and there is actually more beneficial than harmful?! ;) x

Drttc · 16/01/2017 12:09

I'm so sorry Mochita... It's such a crushing feeling and I hope you can find some comfort/distractions to make you feel as best you can :-(

Drttc · 16/01/2017 12:14

Oh Rosa! So happy to hear from you but sad to see you're in this stressful situation once again. I do think how great a gift we've been given considering many of us are willing to go through the heart ache all over again! Gosh I love my little boy so much!!! We're always here for you and I'll have you in my thoughts hoping to hear good news lovely xx

How are you feeling Snoopy?

Hi Tumtimes!

tiredhs · 16/01/2017 12:54

Hi ladies. First time following immune protocol (25mg steroids clexane intralipids) but have also switched some of my normal meds as doing a FET with IVF. Question for any of you taking steroids - did they surprise any breast pain? I normally get sore boobs from the progesterone but so far I don't really feel anything? I'm also taking lubion injections instead of the cyclogest pessaries so any experience of others with this would be helpful. Not sure if you get less side effects with the injections. Stressing that my progesterone level isn't high enough! Thanks

Seekingmiracles · 16/01/2017 12:57

Oh Rosa, I'm sorry you're going through this hell again. Its horrendous. We're all here to hold your hand, really hoping that you get some good news.
Mochita - sorry you're having a tough time too. I know it's hard, especially when you're so desperate for a baby. You hope so much and each month is a blow. It took me 6 LONG months of treatment before if I finally got lucky, so don't feel disheartened. Paint a smile on and going into this next month with a new positivity. Hope it happens for you soon.
Keep strong ladies and look after yourselves. X

OP posts:
Snoopysimaginaryfriend · 16/01/2017 15:38

Hi tiredhs. I think steroids definitely can suppress breast pain and can alter lots of different 'typical' pregnancy steroids. What dose are you taking. Are you under the care of Dr s?

drttc I'm ok. Scan on Thursday morning before intralipids. The closer I get to the scan the more anxious I get, which is so silly because since the last scan there has been no spotting whatsoever even though I went back to using one cyclogest pessary a day because I realised after I left they'd only given me one box and I couldn't be bothered to go back.

The NHS are doing their best to mess me around as usual. I couldn't get an appointment with the GP over Christmas, finally got through to a receptionist two and a half weeks ago but had to wait until last Friday to see the GP. Told them I'm pregnant, I need my thyroid levels checked and you might need to alter my meds, he printed a form told me to take it to reception. The receptionist says they no longer do a walk in blood clinic and I have to book an appointment, next appointment is this Friday! So it's gong to be about a four week wait just to get my TSH level checked.

So I've booked the Nuchal scan with Dr S

Snoopysimaginaryfriend · 16/01/2017 15:39

Sorry tiredhs that should say pregnancy symptoms not steroids and I'm afraid I don't have any experience of injecting progesterone.

Rosa27 · 18/01/2017 08:55

Thanks Drttc and Seeking .. Lovely to hear from you. I've been trying to lie low as I have to bide my time until Friday morning as they need a week between scans to confirm a miscarriage or missed miscarriage. My HCG more than doubled just in 3 days .. But they prefer to see that in 2 days. I've no symptoms at all and only the tiniest sac was spotted last Friday. So I guess no reason to hope given I thought I should be 6 weeks but at the very least 5 weeks. I do hope I'm wrong. Any one have any stories of slower rising HCG and seeing less than expected that ended well?! X

Snoopysimaginaryfriend · 18/01/2017 14:11

I have read that they don't actually looking for a doubling, I think they actually look for a 60% increase in two days but because that requires calculations they usually simplify it to 'doubling or close to doubling' every two to three days. So it could be ok Smile