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

seeking and amelia great news! So pleased for you both. I didn't see Dr S on the NHS but I my 16 week appointment he told me I didn't need the last intralipid because jelly fish was measuring ahead and he checked I wasn't having any issues coming off of the pred etc he didn't retest nk cells.

littlebear I second everything that seeking has said. I don't know much about IVF but it does seem counter intuitive to take you off of the steroids.

trying so good to hear from you. I'm sorry it all went wrong, with all your hard work and everything you've put yourself through it must just feel like one slap in the face after the other. I will never understand why bad things happen to such good people. We're always here for you x

Thanks Seeking, that's a relief to hear re. The 9 wks mark.
Also interesting re. The 16 wk appointment - I think I'll just stick with Dr gorgy.
Littlebear, who's ur consultant?

Snoopy, did you start weaning off pred at 12 weeks? Also did you have the harmony test? Drttc did you? I can't decide what to do. Part of wants to because of the last loss but the other part thinks it's just another expense. My current thought is NHS nuchal scan and if that comes back high do Harmony. Finishing it hard to think that far ahead as well

Thanks Snoopy and Seeking, I thought so too. I've already questioned him twice and emailed him all the studies that used Prednisolone until 12 weeks, but he's refusing to budge.

Amelia: My consultant is the director of Bourne Hall, I'm a bit wary of writing his name on here though.

Any suggestions on how I can get hold of more Prednisolone if he won't give it to me? Should I try to book a private consultation with another consultant? (My IVF is NHS funded, although I am paint for the Prednisolone as it isn't included in the NHS package)

Thanks ladies!

Congrats on your scan today Seeking!!! Just a few weeks until you pass the 12 week mark. You're carrying your take home baby :) !!

I toyed with doing the harmony test but decided it was an extra expense. Dr S also mentioned that at this age it wouldn't be considered an important test either. I ended up getting my nuchal test results quite quickly (went private) and by then they even made an unexpected educated guess on the gender. Was very happy with my choice! I know it's so hard and tempting to do 'something' but harmony results come back around the same time you have your nuchal scan anyway. That said, if money were no object I'd have done it.... But I'm the girl who's had over a dozen scans this pregnancy

I also started weaning off Pred at just after 12 weeks and I believe you finish around 14 weeks.

I did the same as drttc and had a private Nuchal scan. It was very thorough and enough to put my mind at ease. I also had an early guess about gender which was correct (when I went for my 20 week NHS scan they scoffed and said the doctor couldn't possibly have known at twelve weeks and only charlatans guess but then I pointed out he used to be the consultant in charge of that very unit and they didn't say anything else haha)

I think I started weaning off pred at 12 weeks, can't really remember. But I did just sit down to enjoy a cup of tea to discover I'd forgotten to put the tea bag in

littlebear it may be worth contacting someone like prof bronsen or prof quenby at Coventry. If they won't prescribe pred to you they may be able to put you in contact with someone who will. I've heard their secretary is very nice and understanding.

Thank you Snoopy, I will give Conventry a all. Thanks you all for letting me pop in and I hope the rest of your pregnancies go beautifully

*call, not all!

Hey guys - its been a long time since I posted but I have been reading up on the latest goings on and wanted to comment on the Harmony Testing bit.

I am now 13w 2 day pregnant and awaiting Harmony Test results as I am high risk for trisomys. Its a worrying time but I am hoping for my results this week.

Hope everyone is ok - I am so pleased for you seeking and DRTTC.

Hi ladies

Good vibes all around with various pg news, well done to all those with good results, you're an inspiration for the rest of us :)

Not wanting to spoil the mood but I have my Dr S follow up appointment with my blood results back today late afternoon and literally shitting myself...
Not sure what will be worse, low NKs (= no real explanation about my losses as this is the only thing I haven't check for within the known spectrum of mmc causes) or high NK's (= aggressive treatment plan which I know for a fact my DH is not in agreement in)

I guess just having a bit of a shite day followed by a weekend full of happy announcements which I didn't react to very well and the dread of impending results :(
Are there any specific things I should ask Dr S about, do you think?

Hello everyone - hope you're all well :)

annaif - best of luck with your appointment. I know exactly how you feel as I got my results in February and had similar fears. Now that a bit of time has passed, I'm glad that the tests showed something as it means that hopefully it can be tackled. I also understand now that it's not just about high or low nk cells so your treatment might be more or less demanding depending on what comes up. I then also went through some guilt as I felt as if my body had killed my baby (mmc in November '15).

Fingers crossed for you :) x

Hi annaif I hope this afternoon goes ok - I understand how you're feeling. I guess you need him to give you every possible option he can give you, based on your results.

When I went to get my results from Shehata I felt similar. I only had borderline NK cells but still enough to make an impact and be prescribed the pred. I also had the MTHFR gene which I attribute blood clotting issues to.

Let us know how you get on x

I am considering calling Kings to see if my results for the harmony are back, I'm climbing the walls here. Result waiting sucks.

I think we all know how you feel Anna. It's horrible. But I felt somewhat relieved when I had the diagnosis. There was something to pin it all on and a treatment plan that could hopefully help. Is your dh just worried about the use of steroids or the cost implications?

Thanks for your input tumtimes, fingers crossed you get the results you want. I've decide to stick with the NHS and then if that comes back high I'll do Harmony.

What made you guys go private for your nuchal Drttc/Snoopy? Just timing?? Or anything else? X

I think good plan Seeking. My age made my back ground risk before Nuchal scan 1 in 148 for Trisomy 21 and then my blood results brought that down even further so they offered us CVS and I opted for Harmony testing. But I didn't realise a 2 week wait. RAH! Its been very up and down emotions wise this end. Hopefully only a few more days.

Best of luck Annaif - let us know how it goes.
I'm feeling a bit ripped off and not sure if I'm in the wrong to feel this way. I'm 9+1 pregnant and Dr gorgy has ordered an update NK CELLS & CYCLOTRONS tests to see if the levels have dropped with the 2 rounds of intralipids and medication . The tests are £700 and won't be ready for 2 wks but I'll hopefully be 11 wks by then... Surely Baby is in a safe place by then and I come off everything? Why does he want these tests and did everyone else have to get these follow up tests too?
I've to pay another £170 to get my results! Meanwhile Shehata on the NHS doesn't want to see me till I'm 16 wks...and just told me to wean myself off the steroids at 12 wks... What do u ladies think? Am I over reacting or just trust Dr gorgy?
Thanks

Sorry another question ; doesn't the NHS give you a blood test at 10 wks to check the probability of any abnormalities? What is the difference between this and the harmony tests?

I can't give any advice as to why Prof Gorgy re-tests. DrS doesn't. I would probably feel a little bit like I was being taken advantage of though. But then that's only knowing that DrS does it differently. Perhaps if that's all I knew I'd just suck it up.
The nuchal scan and combined blood test on NHS gives an 87% accuracy for trisomy 18,21 and one other (can't remember which). This is based on a combination of your age, the nuchal fold measurement and the results of the blood test. You will then be given a likelihood of those abnormalities ie; 1:1000
The harmony is more advanced, it tests the babys dna in your blood. It's gives a much more accurate result. 99% for downs and I think around 92-97% for the other two trisomies is looks out for.

Amelia, Hmmm I personally would want to know what the implications are if you don't test. End of the day that's a lot of money so there needs to be a good reason for testing so near to coming off the steroids anyway.

So the NHS do the nuchal scan at 12 weeks and that is a combination of an ultrasound scan to identify soft markers known as nuchal translucency and also nasal bone, heart function and liver etc. And also two blood tests which are for your hcg levels and also the Papp-a score which is placental function. Based on these combined results they assess your probability of your baby having trisomy 13, 18 and/or 21.
This is also based on your age. I'm 37 and before all of the above tests my probability was 1 in 148 for trisomy 21 (Down syndrome) and after my tests because my Papp-a was low my score became High risk at 1 in 63.

At kings they offer you three choices, cvs, do nothing or harmony test which if done privately costs 500 pounds. Most hospitals don't offer harmony free of charge.

We chose harmony as if the child had downs we would keep him/her anyway plus I'm not risking cvs with my mc history.

Thankfully I got my results last night and it's 1 in 10,000, I'll take those odds! The harmony test looks at the baby's blood in your blood and checks for all three trosmies and its 99 percent accurate.

Lots of older expecting mums decide to have this test privately from 10 weeks as it's likely their risk odds would come out High owing to their ages alone!
Hope that helps
X

Hiya

I did the Harmony test with my second pg privately as the NHS nuchal scan calc gave me 1 to 300 which was considered low risk but I thought it was way too risky to not recheck ourselves.
However after changing hospital for my antenatal care in that pg and going from The Royal London which was disappointing in many ways, to UCLH, I was told that if the result was 1:300 in UCLH this would be considered medium risk and I would be offered the Harmony test free of charge....

Something to consider? I also went to see Dr Shehata ysd and got my NK results back. He gave me the paper with the proposed treatment plan and ultrasound test dates and I don't recall seeing anywhere that he would retest for bloods around 12 weeks.... I have heard really good things about Dr Gorgy from other patients who consider him to have a more personalized approach to his patients (whereas Dr S has been accused by some of having a mass production/factory line attitude) so it's a difficult decision to make. Can you challenge him a bit more as in why the testing is so essential?
x

Great new regarding your harmony results tumtimes
How do you feel after your nk results Anna?

Thanks seeking xx

Thanks for asking Seeking
Not sure what to think about my results, they were not straight forward in any way (they never are though)
Emphasis was put on how bad a state my thyroid is in, with soaring antibodies and very high TSH (though I've been on thyroxine since Jan' but we have now doubled my dose as it didn't seem to do anything). Was also confirmed to have Hashimoto's auto immune hypothyroidism which is a condition I'm going to have to deal with for life so not happy about that at all....
We were told not to ttc before my thyroid is sorted and once the TSH drops very significantly from what it is now, I was told to follow his complex NK cells treatment plan, with pred, intralipids, aspirin etc. I have normal NKs when not pregnant but quite high in a pregnancy state of being....
He doesn't seem to believe in heparin (no clotting found in my testing) or progesterone but they are both used and prescribed to me by the Coventry clinic so I would take the initiative to add them to the mix.
My DH is very concerned about the use of steroids, he's worried that I'd be subjecting myself to all this without any good result, he's afraid of long term side effects to mother+child, he's also conscious of the overall cost of it all from pre-conception to (hopefully) delivery.... so I can't really jump the gun and enforce anything on us.

I am slightly overwhelmed and shell shocked by it all so not making any decisions one way or another yet. And since I can't do anything apart from focusing on my thyroid for the time being, I will just stick my head in the sand for the foreseeable future.

Just a combination of and

It's totally understandable that you feel overwhelmed by the results Anna. Especially when some of it was unexpected. I think using the time while you sort your thyroid out to think is a wise idea, hopefully when that has come down you'll feel in a clearer position to take on the other stuff.
I knew it's so daunting when you start to think about how expensive it's going to be, dh and I just had a f**k it attitude and thought we'll worry about the money side afterwards. Granted I now have a credit card with way more on than I'd like but hopefully this is it now.
Regarding the steroids - it's hard to know what long term side effects there may or may not be, but so many ladies have used steroids during pregnancy and both her and baby have been fine - it's used for so many things not just nk cells. It's not ideal but if the end result is a baby it's worth it in my eyes.
I hope after a few days to process it all you feel a bit better X

Thanks so much for the replies ladies, really good info there. I've already paid and had the test but sent an email to delve further into it for my piece of mind. In not sure why I'm on clexane as my bloods are fine but happy to take anything and everything that helps but do need to understand why ... Hope I'm not being hormonal and difficult!!
Anna, I too was overwhelmed but it's fantastic to have answers and once you get your head around it you'll be delighted to be able to treat it.
Tumtimes - great relief. Thanks for the info. Xx

Hi ladies
Sorry I've not been on here for a while so not up to date with everyone's stories. But I hope everyone's doing well xx
I'm in a bit of a pickle! Have a faint second line this morning (period due today) tested 2 days ago and thought I could see the faintest line but so faint I thought must be evaporation. Today's is darker! I'm really shocked after what dr s said at my scan (that big folli was a cyst and I wouldn't ovulate) and he recommended to not have the intralipids. So now I've those mixed feeling! Happy. Scared. And annoyed for not having the intralipids and thinking it may well end no sooner than start. Also having period like cramps. We're meant to be driving down to Cornwall this morn till Sunday. So now not sure what to do. And off course it's bank hol! Will talk to Louise this morn. But dh is feeling that we shouldn't miss our trip, mainly because he's thinking because of the situation the bfp might not last. I also have acupuncture on tues and she said she thought my period would start in a day or two. Although my boobs are killing me (have been for 2 weeks) and my bbt is high. Sorry ladies just need to tell someone!!