Immune /natural killer cell treatment when ttc or pregnant (aka the 18th pred thread!)

[Hula2]

This is a thread for those diagnosed with high or very high natural killer cells and trying to concieve or are pregnant and taking steroids/intralipids etc

Newcomers very welcome

[annaif]

Hi seeking- how does it work with the new thread? Do we have to search for it and add ourselves?!

[Seekingmiracles]

I've started a new one but can't link it as I'm on my phone x

[Tumtimes1]

Thanks snoopy for sharing that. I'm so happy that you find yourself in the situation you're in now. You deserve it! xx

seeking sounds like Mr S may have turned a bit more relaxed about inherited thrombolias which is great!
When I had my daughter I stayed on the clexane until 3 days before my planned C section xx

Can someone start a new thread please? I don't know how to do it xx

[Seekingmiracles]

I'm hetrozygous for Pro-thrombin gene mutation - basically a minor sticky blood condition. DrS did give the option - said I could have a special scan at 24 weeks to check blood flow and then stop fragmin then of fine or continue until birth. I decided to go with the second as didn't want any risk. I have no idea why they stop at 36 weeks normally. I get that you can't take in the 24 hours before c-section or epidural but DrS said that is easily managed. I'm gonna push this though...!! X

[Snoopysimaginaryfriend]

tumtimes I believe I'm the C677T one. I did have it in my mind that I was going to push for clexane or fragmin but we were at the start of a two week holiday when I got this bfp so by the time I got back I just went along with what I was told and stuck my head in the sand.

I'm now 30 years old, no previous children. Had first mc (missed) diagnosed in Nov 14 at about 11 weeks followed by erpc in Dec 14, second mc at about 5 weeks in Feb 14, got all the tests done with dr s but bfp in May 14 so started meds for high nk cells after positive test, mc at around 7 weeks (I personally believe that one may have been chromosomal, no heartbeat ever seen). I always got pregnant first time trying and would never ovulate immediately after a mc. We took a break in July 14 and started again in August with pred from ovulation, aspirin, vit d, fish oil, metafolin, wobenzym and NAC. I messed up August by taking pred too early which they delayed ovulation so we missed the window. In September I used opks, got a bfp. Started cyclogest immediately, first intralipids at about seven weeks (only ended up doing three instead of four because of timing) and it just seemed to work.

I take thyroxine as I was previously diagnosed hypothyroid but this has always been managed so was not believed to be the cause of the miscarriages.

Before this pregnancy I changed my role at work after six years of working stupid shifts. I think this has definitely helped my overall health.

My family also has a long history of autoimmune disease including psoriatic arthritis, addisons and sarcoidosis. In fact there is only one female in my immediate family not diagnosed with something and she's only 21. I don't know if my crappy genes have had some influence.

Sorry this is so long but didn't want to drip feed

[Tumtimes1]

Hiya seeking what is it with 28 and 34 weeks? I keep reading this online that ladies with thrombosis are being told their meds are being stopped at these times in their pregnancies? What did your consultant say was the reason for this? What is your thrombolia do you mind me asking? x

Hiya snoopy I'm also hetero (so one copy) are you C677T or A1298C? Because this again has a bearing on the situation I believe. Would you mind me asking you to update me on your history and condition again? This is all very useful for me. And obviously the protocol you have followed has fully worked for you so all good there which is reassuring to know. x

I had the MTHFR test with the Mr Shehata tests and when he saw I was MTHFR positive, he believed no clexane from the word go, only aspirin. He also didnt say anything about folic acid at all. He was much more bothered about my NK cells.
Which would have been fine had my NHS consultant then not said NO NO you need the clexane for the WHOLE pregnancy for this MTHFR gene (I researched this and it seemed to back it up) and so that is what I did. But then on this pregnancy, the same consultant is saying to review this at 28 weeks. So for me, I just CAN'T come off the clexane as this was what I obviously believe made things work when I had got my daughter last time round. I just cannot risk coming off it at 28 weeks. Surely they have to understand this.

In terms of folic acid I take the methyfolate version instead and B6 and B12 in addition to my fish oil, vitamin D and baby aspirin.

Wow Billy no wonder you're worried to have a scan but I am SURE it will be fine. Obviously completely your call as to what you want to do. Keep us posted though xxxx

[Snoopysimaginaryfriend]

Haha that's an interesting one!

I upgraded to the raspberry leaf tablets a few weeks back, I do get nice strong Brixton hicks! I'm also eating lots of pineapple and forcing myself to eat dates (that's a sick face, I hate dates haha) I draw the line at hot curry for several reasons 1. Don't like it 2. I think I have a little haemaroid developing and 3. I haven't worn underwear for a week as its too uncomfortable and I'm needing to go much more frequently as it is.

It's all so glamorous haha

We need a new thread soon!

[Seekingmiracles]

Try not to worry about the possibility of induction Snoopy. I can imagine if you have that kind of fear it must make you so anxious though. Try all the old wives tales... One of my clients is a doula and she says that (tmi alert) giving oral and swallowing can help get things started! Hahaha! Sorry! But also try raspberry leaf tea, long walks, hot curries etc....
My consultant is already talking about inductions.... Not happening if I can help it!!

[Snoopysimaginaryfriend]

hi billy, I didn't have a scan until eight weeks with this one. Eight weeks is the point my first pregnancy stopped developing (missed miscarriage) so it helped me to see a heartbeat after that point.

I feel very weird. It still doesn't seem real. I keep trying to imagine my post pregnancy belly. Women in my family all get stretch marks so I knew they were coming, but it's till freaked me out a bit.

[billy15]

snoopy can't believe you're due sun that's so exciting (and seems to have gone quick!). How are you feeling?

Thanks for the encouragement ladies! tumtimes my acupuncturist said when they very little the sound waves can shock them as their ears are one of the first things to develop. Then when I googled it there was quite a lot of ladies saying they miscarried just hours after an early healthy scan!

I'm sorry I don't know about MTHFR. Is this something dr S tests for?

Sounds like it might be worth you both seeing a private consultant if you can? And maybe less stressful than trying to persuade the nhs.

[Snoopysimaginaryfriend]

Oh when I was at the day assessment unit yesterday (damn itching) I asked the midwife about group strep b testing and she said midwives had been pushing for it but, as with most things, the NHS don't think it's cost efficient but she would have it done privately if it were her baby. Then she said 'You know you've been waiting a long time today. You say you're worried about some discharge? We'll just take a quick swab and send it off' wink, wink. Isn't that nice of her?

[Snoopysimaginaryfriend]

seeking I just don't think she'll ever come and I'm scared of induction. I've seen people stabbed dozens of times, people shot, horrific car accidents, decomposed bodies and that doesn't upset me at all but I don't like drips and needles etc being stuck in me!

[Snoopysimaginaryfriend]

tumtimes are you heterozygous or homozygous? I'm heterozygous (I think, the one with only one bad gene) so I took metafolin instead of folic acid, until i ran out at about six months, but I only had the 75mg of aspirin and no other blood thinners.

I would imagine that the hospital should be treating you in much the same way as they treat women requesting caesarean for non medical reasons. If the consultant you speak to refuses and you still want the clexane they should refer you to another consultant. Could you contact PALS? Or if all else feels speak to Dr S about getting it privately?

[Seekingmiracles]

Wow snoopy!! Sunday!! How are you feeling?! So exciting!!

Tum - I feel your pain - my consultant wants to review my fragmin use at 34 weeks despite me telling her that DrS said to use all the way through. I'm gonna just tell her that if she doesn't agree to it I'll do it regardless and get it from DrS! I'm not messing with this babies life - she herself said she needed to research my pro-thrombin mutation as its not that common And she hadn't common across it! Twat!! Just stand up for you and your baby, as you say what's different with this pregnancy?! Nothing!!

[Tumtimes1]

Hey all.

Billy good to hear from you. Was wondering how you're doing. I SO know how you're feeling right now but as a meticulous symptom spotter myself, can I just say that EVERY pregnancy is definitely different. You should remember that mantra at all times if possible. I have had 5 pregnancies which include my 3 MC's and ALL symptoms were/are different. EG: I didn't have much cramping in my last pregnancy that went to live birth and major boob pain. But this one I had NO boob pain and major cramping. Am currently 21 weeks.
With my miscarriages, again all different. Some boobs hurted and had cramping, some, no boob hurting and no cramping. There really is no rhyme or reason. The only way you can ever know whats going on is by a scan. What does your acupuncturist mean when she says the baby is more robust? Does she mean further along?
What you know is that your HCG IS rising as the dye is increasing on the test. You ARE pregnant. I feel very positive about this. :-)

Hi Seeking congratulations on your girl. That's brilliant news. xx

Hiya Snoopy not long to go now! How exciting. xxxx

Four I had the jittery thing but it soon went. x

Hey everyone else! Hope everyone is ok xx

The latest with me is I have been doing some MAJOR research on MTHFR mutation genes. This is because as mentioned in a previous post, my consultant (who is very random at the best of times) has mentioned that they will be reviewing my clexane use at 28 weeks. For me this is CRAZY and has added stupid stress onto an already stressful situation. On my last pregnancy that got me a baby they had me on clexane for the whole thing and so what's different with this pregnancy? Why would they dice with my baby's life? I have 16 pages of research collated so far and its incredibly interesting. The problem is there are hardly ANY specialists in the UK who cover the MTHFR gene but its argued that this is responsible for MANY issues of miscarriage and pregnancy complications depending on the mutation one has.

Does anyone else on here have MTHFR?

[Snoopysimaginaryfriend]

Hi everyone, I'm still here! I'm so tired that I'm getting everything mixed up but I'm thinking of you all, sending positive thoughts and signposting a lot of people this way (dr s certainly seems very popular these days!)

Yeah seeking, another girl! So happy for you! Sorry about the rash though. If it makes you feel better I haven't worn underwear for a week because my groin just gets so itchy

billy keep going, as stressful as it is you could be one of those women who does have some bleeding during pregnancy. Was it you seeking who had all the bleeding at the start (sorry, I should remember) I didn't have a scan until eight weeks and I also had very few symptoms with the pred apart from insomnia (which has never bloody gone away)

anna, happy belated birthday!!!

drttc, tumtimes how are you?

fourleaf and lou glad the link worked, I'm so technologically inept haha

Sorry if I've missed anyone.

As for me, due date is Sunday! I really don't think she's going to make an appearance by herself, she just seems so comfy in there.

[Getintogear963]

Hi Seekingmiracles
Thank you so much for coming back and my heart sincerely goes out to you and all of the other ladies on this thread... it so heartbreaking as we all know and as you probably felt / feel the same that it is so good to hear success stories as it keeps the hope sparkle there. Fantastic for you that you are now 17 weeks and thank you for sharing your history with me.
I will browse through the thread to see where people are at. Isn't it good to have such a forum for people to share their common experiences and all cry (and laugh) together!

[Seekingmiracles]

Thanks ladies, yes would have been just as amazing had it been a boy. We are excited and over the moon either way.
Drttc- I'm 17 weeks now, counting down to anomaly scan

Turns out my eczema is a fungal infection - I basically have thrush under my arms! Gross!!

Billy, no one can tell you when to have a scan. I know DrS likes to see patients every 2 weeks ideally to monitor the growth etc. I asked about dragging it out inbetween and he advised against it. I've had about 10 scans so far! It's down to you though, I took comfort in seeing the heartbeat every few weeks, I thought I'd be a head in the sand kind of girl but no.
I also NO symptoms, despite bigger and slightly sore boobs that eased at 9wks. So I wouldn't worry. The pred masks it all, so it's perfectly normal for us lot.

Fourleaf - take it after your breakfast - should help.

Lou - we're all in the same boat Hun, some haven't had 4 yet, most have had more. And are all in various stages of treatment. But LOTS of successes. I personally had 4 mcs and am currently 17 weeks pregnant. Think there's about 5 or 6 of us currently pregnant on this thread. So try to be positive, the treatment isn't a guarantee but it definitely gives you a strong chance.

[Getintogear963]

Hi, sorry if this is asking for stuff that people have already shared but I am looking for any recent success stories for those suffering multiple m/c due to High NK Cells (which is what I have). After now 4 losses and not yet a Mum I have zero time to waste.... so I am about to embark on Mr Shehata's steroid treatment plan with infusions (just on a break from my last m/c and going to ttc again in couple months).
Has anyone recently been in the same boat as me and had success with the steroid treatment? I would so love to hear.... I know no one can tell me I am going to have a baby ever, but any hope would really help me right now... thank you ....

[billy15]

Sorry anna *the other day (predictive text fail!!)

[billy15]

I'm still clinging on with the skin of my teeth! Had another small amount of spotting on Monday and was very upset so did a test that eve which was darker than the one the previous Thursday and was taking some dye away from the control strip. I never knew tests would do that and apparently that will continue to happen more of the hcg keeps rising! Quite handy to know!

So I had booked an early scan (6.5 weeks) but then saw my acupuncturist on Tues who said its best to wait till after 8 weeks to have a scan, when the baby is more robust! Then I googled this!! Now I've the absolute fear about scans and have now gone the other way and trying to delay my scan with dr S till as late as possible. I've one booked on exactly 8 weeks and may try and get it later!

I still feel like I'm not having any symptoms - no cramping/pulling/stretching and no nausea. Only bigger and sore boobs! Oh and insomnia maybe from the pred.
Did anyone else have this experience? I'm terrified it's stopped and the hcg is just taking some time to fall.
I'm sure my first 2 pregs, when I got to 8.1 weeks, I had a lot of feelings in my uterus! So scared to believe it can work after 6 loses!

[billy15]

Hi ladies

seeking that's very exciting (of course a boy would've been just as exciting!! )

anna happy birthday for theories day

fourleaf I'm pretty sure your meant to take the pred after breakfast. I think I remember feeling a bit jittery when I first started it but that kinda wears off.

I hope everyone else is doing well. And yes trying if you're out there always wondering how you're getting on!

[fourleafclover82]

Thanks seeking! And congratulations on finding out its a girl today!

So this morning I took the first 25mg of the pred. I took it at the same time as the orazomopan before eating breakfast.

I feel really jittery today and increased heart rate. Anyone else feel like this when they first started. It's freaking me out a little. Maybe I should have eaten breakfast first?

[Drttc]

Omg Seeking!!! Congratulations!!! So happy for you :) How far along are you now?

Snoopy- how's the final countdown going?!

Trying- if you're lurking, thinking of you Hun xx

[annaif]

congrats seeking!! lots of girls in the thread :)

fourleaf, I hope you feel a bit more settled with your decision this morning- have you already popped your first pred pills? It becomes less stressful once you're on the meds as it makes you realize that it's actually not detrimental- you still feel like yourself and not like some science experiment (which is how I felt the days leading up to taking my first pred cycle, until I actually started taking them)

Also, if it's any consolation, my GP didn't hesitate to prescribe me pred and progesterone after showing her the Coventry letter (as I am mixing+matching the two approaches by Shehata and Coventry) and she actually said to me that it's quite common to prescribe pred in pregnancy (in this dose) for various reasons.

I think one lady in the FB support group mentioned that it's prescribed for acute morning sickness as well (don't quote me on this as I may be wrong)?!

I think it's very positive that he's given you the choice- it hopefully means that he's not overly concerned about you being in a "high risk" category
But I can imagine that having the choice to yourself can be a bit of a mind f*ck
xxx