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Discussion Starter · #1 ·
I have seen a few people post their NK cells results and none of them seem anywhere near as high as mine so I am a little concerned!  From what I can see the killing power of my NK cells is huge - I just haven't seen any results from anyone that seem as bad as this.  :(  Hoping there is someone on here who knows more about this, if so please help!!!  My consultation with the doctor isn't until January.

Total NK cells absolute count 395.6
Total NK CD 56/16 percentage 19.9%
Total NK CD69 absolute counts 1.03
Total CD69 percentage 0.20%

NK cell Cytotoxic assay Part 1:
50:1    39%   
25:1    26%   
12.5:1  16%       

NK cell Cytotoxic assay Part 2:
50:1 with ivig 6.25mg/ml        12%,
50:1 with ivig 12.5mg/ml        7%,
50:1 with steroids 5mg          16%,
50:1 with steroids 10mg        3%,


Thanks in advance,

Lindz xx
 
 

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Hello Lindz :)


I just wanted to let you know that I have been diagnosed with extremely high NKCs, my consultant thought that my 1st blood test was a lab error, so I had to have a repeat blood test.


I dont know all of my results, but I know that my NK CD69 count was 4.95! initially and my second blood test came back with a level of 3.76! which is still extremely high.


I am on 25mg steroids from ovulation till positive HPT, then once pregnant my does will rise to 40mg.  I may also need IVIG or Intralipids intravenously.


Did you have other m/c testing done, i.e blood clotting, chromosomal etc?


I have also been diagnosed with Factor V Leiden, a blood clotting disorder.


I am on my second cycle of steroids, will be testing in a few days and pray that I finally get a sticky BFP.  I am sorry for all your losses  ^hugme^


Good luck hun and **BABYDUST** :)
 

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hi those are ria results so I am not as familiar with them as RFU.
yes, the cytotoxicity is high, but it seems to respond pretty well to steroids and to ivig (although the test tube tests are not a perfect analogue of what happens in the body)

you CD69 count is not actually that high - cd69 is the measure that RIA say is associated with cytoxicity.

Looking at those results, I guess your immune options are to
a) try with steroids (plus clexane and maybe gestone)
b) same again but with intralipids and/or ivig
c) have the full chicago tests to decide whether you want to try humira and/or lit as well as intralipids/ivig
 

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i too had very high NK cells 38%. they do fluctuate and i have tried a diet which is suposed to help - as agate sayd in her FAQ cut out saturated fats etc and my second results came back within normal rage which totally shocked me. Apparently stress also has an affect although easier said than done
 

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Discussion Starter · #5 ·
Thanks for your replies  ^hugme^ - it's reassuring to know I'm not on my own!

Catherine - I have also been diagnosed with a clotting disorder - Factor II prothrombin which has similar effects to Factor V Leiden.  Have you been prescribed clexane or something else for this?  Unfortunately I have to go and see a haemotologist first as I have other problems (Raynaud's and petechiae) which I'm told might affect what they are able to prescribe for me.

Needjustone - thank God there is someone out there with a result similar to mine and that you got your levels down too.  I can't believe that cutting down on saturated fats helped so much.... WOW!  Definitely something worth trying  - thank you.

Agate - you seem to be something of an Immunes Guru!... I wonder if you can shed some light on why my CD69 is ok which is the one associated with cytotoxity, but my cytotoxity is sky high?  I would have thought if my CD69 is normal that my cytotoxity would be normal too?  I'm well confused!  :-[ Also, as I seem to respond to both steroids and IVIG, do you know how my clinic would decide which treatment to give me, and if one is more effective than the other?  I'm hoping they are equally effective as I can't really afford IVIG, but I think they have started prescribing Intralipids there too... I'm guessing if IVIG gets your levels down then intralipids would too??  I am at the Lister and I don't think they prescribe Humira, and I have never heard of "Lit" I assume that it is an abbreviation for another medication??!!

This fertility journey is so hard - praying 2011 is a better year for us all.  ^pray^ ^pray^

Lindz xxx
 

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lindz:  maybe check my faq under d for diet and s for supplements (humira is under h and lit is under L)
I can't really shed any light on your CD69 - except that RIA offer the CD69 test because its cheaper than doing a cytoxicity test and there is an ASSOCIATION between high CD69 numbers and high cytoxicity - but that just means that they TEND to be high together, not that they have to be (as far as I can see) - in the same way that there is a tendency for lower live birth rates with (untreated) high toxicities - but that does not mean that live births never happen, just that there are less of them.

steroids are much cheaper than ivig - so you might want to try steroids first and then only try steroids plus ivig if it doesn't work with steroids, - its something you aren't going to know until you try (or decide you just want to go all out for it from the beginning).  intralipids is still a lot more expensive than steroids, but a lot cheaper than ivig - so some clinics would suggest ILs.  Some clinics say that ILs works just as well/in a similar way to IVIG - others disagree.  It is possible to do a lab test using ILs in the same way as the ones you've had done with steroids and ivig, but so far, only Dr G tends to do that one - but these tests are only indicative - they just look at what happens in a test tube after 2 hours - the response in your body can be quite a lot different - the real test is to try it with your fertility tx.

I am not sure if the Lister never prescribe humira or whether they only prescribe it if you've already tried everything else.  Normally it isn't considered unless you've either had a uterine biopsy that shows high uNK cells or have a high TNFa cytokine ratio test - and even then its only Beer, Dr G and ARGC that use it a lot.
 

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My NK's r also extremely high! And I have factor V Leiden as u can see from my signature which Dr did Yr tests?? x
 

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Hello ladies, so sorry for all your losses :(  ^hugme^ ^hugme^


I tested this morn and got a BFN :( looks like 2nd course of steroids have not worked, but could still be too early.  I have 2 more cycles on steroids before I have to go back for re-assessment.  I am under St Helier's hospital so have only had the basic NKC testing done.  I have read that high CD69 shows how many are activated, is this right?.  I do think that I need more than just steroids to support a pregnancy though with my level, what do u all think?


I know that St Helier's look for a level of less than 0.8, so mine is waaayyyyyy above this level :(.


needjustone, I am going to try and cut down on saturated fats, I do eat allot of food with saturated fats, so that makes sense to me, thanks hun :).


Lindz, I have been prescribed Fragmin for my Factor V.  I only inject once I get a BFP though, until then I just have baby aspirin.


zoeella, we seem to have allot in common.  Dr S done my tests, how about you?
























 

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i forgot to mention that eskimo fish oils also help reduce NK cells. i think its under supplements or diet in the FAQ
 

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thanks needjustone, I have been taking fish oil as part of Dr S treatment plan :)
 

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Discussion Starter · #11 ·
Thanks Agate for being so helpful.  :) I have looked at your FAQs - WOW! Very comprehensive... must have taken you ages! As you said I won't know if anything has helped until I try the meds, the trouble is I don't really want to postpone my next cycle for more testing because of my age so I'll see what the doctor says and then go with my instinct I guess!  The desision is basically between 1 cycle of ICSI with IVIg, or 2 cycles with steroids... all comes down to money unfortuately! 

My doctor is Jaya Parikh at the Lister.  I really rate her highly as she is the first doctor who has actually listened to me and tried to help.  Previous doctor at BCRM didn't believe in immune testing and just said it was my age so I guess all my previous cycles were a complete waste of time and money... but I haven't always been 43  ;D and have been trying to conceive since my early thirties and have never got any further than about 5 weeks pg.  Now I have had my results it all makes sense... just hoping it's not too late for me....

So sorry for your news Catherine.  ^hugme^ I'm surprised they didn't give you the Fragmin during stimms as I've been told that because of my Factor II clotting disorder any medications that increase estrogen and progesterone, i.e. IVF meds or the pill will increase my risk of blood clots by 16 times (I assume it's similar for Factor V??), and that I will probably need clexane from the beginning, plus baby aspirin too as they both have different effects on the blood clotting.  I have an appointment with a haemotologist on Jan 4th so I will know more then.  I guess it's worth asking your doctor just in case?

Needjustone - Thanks for the tip on fishoil - I'm going to rattle soon all the supplements I'm taking!  ;D

Lindz xx
 

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Hi Catherine, yes seems we do! Had my results with Dr S and Dr Gorgy am goin 2 try Dr S protocol 1st as they say they have high sucsess rate for RM will try 40mg steroid, intralipids, clexane etc, think my results with Dr S was 3. Something or another he said they were v.high and 100% the reasons for my MC so much 2 take in!! I just hope & pray that 1 day it will work! x
 

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Lindz, I havent had IUI or IVF yet, waiting on IUI at the mo, and when I did have stimms, i.e Clomid and Femara I didnt know anything about my Factor V Leiden or NKCs.  I am ttc naturally at the mo, but my protocol might change once I have IVF.  I think with IUI I stay on the same protocol as TTC naturally.  I was told the same as u about the pill, so I will no longer be able to have that.  I am heterozygous (1 gene mutation) for Factor V, so my risk is not as high as it would be if I was homozygous (2 gene mutations).  Because my sis had 2 DVT's after giving birth, I will probably need blood thinners throughout pregnancy instead of the usual 3 months.  My sister was diagnosed with Factor V Leiden after I was tested positive for it.  Cant believe she was never checked for this after having 2 DVT's.  I could have at least been on treatment before now if we had known this.  Thank God Dr S told me to get my sister tested also because of her history.  Please let me know how your appointment on the 4th Jan goes :)


zoeella, Dr S protocol is meant to have an 85% success rate, so that sounds good to me :). Your results are high also, I have not met many ladies with such a high level as me.  It is so much to take in and it gets on top of me at times.  I dread going through another m/c on treatment as I will only blame myself knowing that I have these extremely high NKCs.  Its soooo difficult.  I pray that it will work also and I keep telling myself at least there is treatment and years ago we would only have been told to keep trying and there is nothing that they could do.


**BABYDUST** and **STICKYGLUE** ladies! :) x
 
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