NK Cell result back - Very high

[Cuddlepie]

Hey BW, pmed you and then saw this post...glad to hear that it won't interfere with the IVF process, when you adjust your dose, do you consult with your rheumy or Dr.S? thanks hun...

[Where there's hope]

Hi Cuddlepie

I am a bit late entering into this, but I just wanted to share my (limited) knowledge of NK cells. I also saw Dr S and I got a borderline result. My OB is mates with Dr S and talked in detail with him about it. He advised not to base treatment on the BT result alone. Researchers at MIVF (?) recently did a two year study and found the BT had absolutely no baring on the NK levels in the the endometrium. Just look at what happened to Melbel (normal BT and high NK result). I do think your result is significant and if it were me I would definitely proceed with the endometrial biopsy to know one way or another. HTH.

WTH x

[Jodsan]

Hi ladies, I hope you dont mind me crashing your thread, as I'm not doing IVF (it has been suggested but we dont have the money right now). But you girls are all so knowledgeable and it sounds like you are having similar problems to me. I have been TTC for 18 months and have just been diagnosed with Hashimotos and mild lupus. I have just started thyroid hormones, prednisone and have just started taking progesterone for this TWW (apparenty that will also help settle down the immune response). I am now on so many drugs, I feel nauseous and yucky, I really hope they do the trick. Though I cant complain, it sounds a lot worse for you girls undergoing IVF.

My FS said that I also had a few NK cells there (biopsy taken during my lap) and thinks that my immune system is probably attacking the blastocytes (I kind of had the inkling that I was conceiving and not implanting). I dont really understand the results though, it is written as follows: The following cell counts are obtained per high power field (hpf) in the most cellular (non lymphoid aggregate) areas: CD56-40/hpf, D57-9/hpf, CD4 - 45/hpf, CD8-50/hpf. Does anyone know what this means?

Because we cant afford IVF right now (I am studying full time and we are barely making ends meet as it is), I am really hoping we can work all this strange stuff out. Any advice from you very knowledgable ladies would be much appreciated.

Btw - Hi Where there's hope, I lost touch with you when I left the TTC after mc thread. How are you?

[Cuddlepie]

WTH, thanks for the input, that's the first thing my FS said. He said it is not conclusive just to see the b/t result. I did notice Melbel's result, however hers is the other way around. When you say no bearing at all, could there be any possibility that this high level of NK cell present in b/t and none in endometrium?

Its probably a good idea to get the biopsy done and know exactly how big the problem is. Just wondering how different the treatment is? Would the treatment differ depends on the level of the NK cells etc? I am doing some research at the moment and might email Dr. S some questions.

thanks hun

[Possums]

cuddlepie- I don't have any more advice to add here, but just wanted to pop in and say I am glad you have some answers, and can relate to the feeling of the answers/results raising more questions/worries. I really hope you can now go on the path to success and achieve what you long for.

[Where there's hope]

WTH, thanks for the input, that's the first thing my FS said. He said it is not conclusive just to see the b/t result. I did notice Melbel's result, however hers is the other way around. When you say no bearing at all, could there be any possibility that this high level of NK cell present in b/t and none in endometrium?

Its probably a good idea to get the biopsy done and know exactly how big the problem is. Just wondering how different the treatment is? Would the treatment differ depends on the level of the NK cells etc? I am doing some research at the moment and might email Dr. S some questions.

thanks hun

A few thoughts come to mind. First of all, Dr S is the recognised pacesetter in this field. Our friend Meredith flew up to see him and I recall her treatment was based on the BT alone. But yes, I was told by my OB (who is also an FS specialising in recurrent MC) the NK BT result is not a reflection of NK cell levels in the endometrium. This is why the biopsy, rather than the BT, is a part of the recurrent MC Investigation Program. But your BT result seems high so personally I do think you are on to something. It also fits in with your TTC history as a high level of NK cells can affect implantation or cause MC. Perhaps the biopsy would help Dr S/your FS best calculate the optimal dose of prednisone for you. Might also be worth contacting Flowerchild, if you have not already as she was able to help me understand the subject a little better.

BTW - Dr S was also ethically respectful of taking any further steps with me as I am with SIVF, too.

Good luck, Cuddlepie

[Cuddlepie]

Thanks Possoms for your good wishes, I hope you soon work it out what you are going to do for your next cycle hun...

WTH, I guess I am such a bad case and no need for a biopsy, straight to the treatment. Dr.S emailed me said they classify as 'normal, borderline and high' and mine was high, most likely correlated to the endo. biopsy result. Well, at least I can skip that biopsy which I cringe. But always love to hear your thoughts and thanks for always being there for me...

[MeredithD]

CP - I have answered your PM with more info on what treatment I have been on but for anyne else reading this thread I will briefly overview.
I had NK cell test done for recurrent m/c but biology is much the same as per implantation issues - its just at which stage the NK cells really attack the embryo. The other thing to remember, is that levels can vary a lot with time, concurrent illness etc. I questioned Dr S on why I had already managed DS without any diaganosis or treatment. Answer basically is that a) maybe NK cell issues are not the reason for my m/c's b) the problem wasn't as bad during that time c) DS was a particularly strong bubba and managed to "fight back" and keep on sticking
They do think that the NK cells are only really important ( they are actually needed at "normal" levels for correct implanation/placentation) or harmful in the first 12wks or so. After that point they should affect pg to much
Anyway, I only flew up and had the BT ( results around 21% I think) as Dr S thought this result was significant enough to avoid the biopsy , particularly as this would have been difficult for me ( I don't cycle so would have had to do OI just for test)
Dr S was also a bit hesitant with "interfering" to much as I was under another Dr in Melbourne but I was there with her full knowledge and support so he did ease off a bit. He actually reccomened starting the pred at same time as starting IVF stim meds. My first cycle on it, I didn't get pg and weaned over next few weeks but started up again pretty soon with another cycle - this pg.
At 18wks I am now down to 5mg and should be off by 20wks
My most major side effect has been hair loss - losing mountains of hair and starting to become noticeable! Haven't got moonface etc so have been relatively lucky
As for clexane, Dr S said to me he normally only uses pred for NK issues but I had already been using clexane as a trial from my FS ( and had used for DS's pg). Came off it at 8wks after much heavy bleeding and loss of this bubba's twin

I hope your current FS can give you the answers you need CP but as the other's have said, change to Dr S if you are not happy as you really have nothing to lose and he is the "expert" in this field

[MeredithD]

CP - I have answered your PM with more info on what treatment I have been on but for anyne else reading this thread I will briefly overview.
I had NK cell test done for recurrent m/c but biology is much the same as per implantation issues - its just at which stage the NK cells really attack the embryo. The other thing to remember, is that levels can vary a lot with time, concurrent illness etc. I questioned Dr S on why I had already managed DS without any diaganosis or treatment. Answer basically is that a) maybe NK cell issues are not the reason for my m/c's b) the problem wasn't as bad during that time c) DS was a particularly strong bubba and managed to "fight back" and keep on sticking
They do think that the NK cells are only really important ( they are actually needed at "normal" levels for correct implanation/placentation) or harmful in the first 12wks or so. After that point they should affect pg to much
Anyway, I only flew up and had the BT ( results around 21% I think) as Dr S thought this result was significant enough to avoid the biopsy , particularly as this would have been difficult for me ( I don't cycle so would have had to do OI just for test)
Dr S was also a bit hesitant with "interfering" to much as I was under another Dr in Melbourne but I was there with her full knowledge and support so he did ease off a bit. He actually reccomened starting the pred at same time as starting IVF stim meds. My first cycle on it, I didn't get pg and weaned over next few weeks but started up again pretty soon with another cycle - this pg.
At 18wks I am now down to 5mg and should be off by 20wks
My most major side effect has been hair loss - losing mountains of hair and starting to become noticeable! Haven't got moonface etc so have been relatively lucky
As for clexane, Dr S said to me he normally only uses pred for NK issues but I had already been using clexane as a trial from my FS ( and had used for DS's pg). Came off it at 8wks after much heavy bleeding and loss of this bubba's twin

I hope your current FS can give you the answers you need CP but as the other's have said, change to Dr S if you are not happy as you really have nothing to lose and he is the "expert" in this field

[Where there's hope]

Hi Cuddlepie

Sounds like you have an action plan with the assured confidence of Dr S . I really hope this is the turn-around you need to get that lovely little frostie of yours on board and thriving.

Take care, hun

[Cuddlepie]

Thank you so much Meredith for sharing your journey....I am sure it will also give anyone who is interested in this topic a great heads up...

Currently I am on my D5 on FSH, and going to push FS this Friday when I see him to put me on Prednisone straight away, as I had an impression that you don't start the meds until Transfer. It might be for the mild sufferers, but I think in my case, the earlier the better to regulate those NK cells, stop attacking my beautiful embies Please!

[Possums]

good luck with that CP

[Cuddlepie]

I know how NK cell affect implantation and rerurrent m/c is a big debate in the medical world since 60's before I went in for my appt. So when I presented my result to my current FS today and he is on the other side, he showed me a few research showing "The function of NK cells in pregnancy is unknown' and "Use of powerful therapies to reduce levels of NK cells in women with infertility or recurrent m/c is unjustified and is associated with known side effects to mother and fetus'.

He thinks based on my history, the effect of my fibroid presents more significance than treating something that is not proven. He listed all the side effect for steroid such as raised insulin and diabetes etc, He said he'd be happy to treat it only the benefit is greater than the risk, but in my case, he thinks its all risks with unknow benefit.

One one hand, I do have great respect and relationship with my FS and agree with his logic (DH is with him as well), on the other, I am disappointed that the only thing we found out that gives me hope seems disappearing again. He is happy for Dr. Sacks to treat it and said he is not an expert in this area regarding treatment plan because of his belief.

When I first saw my result, I was kind of happy at least we found out sth that is wrong so we can treat it, never known, we are now in this predicament ....

I had an impression that low dose of Prednisone is not a problem and safe with obviously so many of you are on it, I argued with DH even it MIGHT NOT (but possibly might) help with my situation its pre-caution to try the treatment, but obviously he thinks if there is no root of the problem, why try the "poison"?

I am getting that book written by Dr. Alan Beer that Melbel recommended this weekend, so will try to find some answers there.

I really don't know what to do atm....*sign*

[butterfly_warrior]

Cuddlepie, there is a book the lovely sushee sent me that I'd be sending along to you at the moment if I had the foggiest idea of where it actually is after the move. I'll keep an eye open for it - you are showing the same level of desperation as I was when sushee decided it was time to pass the book along to help someone else...

I will admit that prednisone is a nasty drug. I have a love-hate relationship with it, admittedly, but in many ways it's also not that bad. I've been on it continuously since May of 2007 and have to say that while it can mess with blood sugar levels and insulin, I had two full glucose tolerance tests while pregnant and they both showed blood sugar levels that were very much on the low side despite being on prednisone and having a high risk of developing gestational diabetes through my PCOS. I suspect I'm one of the lucky ones and others find it much harder to cope with the side effects (or I've adjusted), but I honestly don't think it's as bad as some people make out. My tune will change with my next dose reduction, however!

What's your gut tell you on this? I've seen too many Dr S success stories to be able to completely discount his theories. I know my immune system is seriously whacked out and attacking me, it's not hard to believe it's also attacking my babies.

I know this is something I've said to you before, but I will say it again. You are the only expert on your body. Each FS has their own little area of expertise and you've got to find the one that will fit you. Does your gut tell you it's the NK cells, the fibroid, or a little of both?

Unfortunately it's just not an exact enough science for anyone to know for sure... Do you still go to acupuncture? It would be interesting to know what they say. At a guess, Leah would still be on leave, but it would probably be worth getting an appointment with one of the others there to talk through things and see what they think - as people who will treat the body as a whole rather than focus on their one tiny little bit. Leah had some special herbs for me to take when my NK cells were discovered, so they may also have alternatives to the prednisone that could be helpful.

I hope some of my late night babble is helpful.

BW

[Sara69]

CP:

that it never can be easy....just saw in another members profile "It's not what you do that you regret, it's what you don't do". Think that says it all.

I think what you need to look at are how problematic are the side effects of NK cell treatment? What you say about insulin and diabetes is not good but it is something that can be dealt with with a controlled diet once you are pregnant? If this is the case I would go for the treatment.

I also think Dr Lok has a point when he is talking about the fibroid. I wonder with all these open questions if you could consider to go for a freeze all cycle this time and then with a good number of snowbubs in stock get the fibroid and biopsy dealt with you coudl then change over to Dr Sachs, to get NK cells dealt with. Can the fibroid and biopsy be doen at the same time?

You would then still have time for at least one more stim cycles this year before the changes to the Safety Net. Once it's all dealt with there is nothing else you can do than hope for the best and you've done everything you can - so much hope your wish comes true

Sara

[Baby Dreamtime]

Hi CP, that is a hard one. I am by no means an expert on prednisone and am in fact sort of self treating my self without a diagnosis, though as I mentioned in the past my FS is happy for me to continue to take it on very low doses whilst not cycling, and as per the colorado protocol whilst I am cycling. I can't argue with your current FSs reasoning, there will always be differing opinions, however I am of the very big opinion that if something isn't working, change it. You have given it your best shot so far and plenty of tries with a 'conservative' treatment. Your reasoning is sound in that NK cells is the only thing you have discovered that is not 'right'. There also seems to be real examples, of where prednisone treatment has helped women in the same circumstance.

If you were on your 1st or 2nd or even 3rd cycle, I would be telling you that you may be too early in the ivf game to worry that this might be the issue, but that is not the case. If it was me with the same diagnosis I would refuse to do another cycle without treatment. That is just my humble opinion. As BW said, it is your body, and you have the right to investigate all options. And there is no reason why you can't try a cycle with Dr S, it might only take one. This game is so hard on us and our emotions and I find myself always looking for the next good reason as to why a cycle might work. In this case I think you have a very good reason for it work.

I hope you can come to a decision you are happy with. I saw your post re your follies, that is the best news, so glad the increased dose looks like it will do the trick. Sending you my best wishes. xx

[Cuddlepie]

*Some Vent first* Why can't things be simple? Why universe putting one thing after another just to make this journey so difficult. Sometimes, I really don't see the light at the end of all these. *Vent finishes now let's get on with life*

BW, you are right, I am so very desperate atm. I don't have much knowledge of how immune system work, but my gut feeling is that mine could be overly protective, to the point that it can be harmful to the embyros. I am kind of person who hardly get sick or get flu (touch wood). I was very keen to treat it like you said regardless of what the research says, but I have to admit, one of the concerns of taking the drugs is 'I don't want my immune system shot to pieces. When you say your immune system is seriously whacked out, was it before Pred or as the result of taking that?

I also have a personal hurdle to get through regarding anything surgical. I guess that's one of the hidden reason I am trying everything I can to put Fibriod issue on the backburner. If you ask me now, I'd try everything to avoid invasive surgery into my body. This is where both DH and Dr. Lok can't understand, he said surgery can't kill you but drugs can (I know its a bit exaggerating but thats his point).

Last night I honestly think that I would like to send Dr.S an email to ask him if you can put me on the treatment plan while I am still cycling with SIVF. I don't know if he will agree but I will try. So my gut feeling is telling me to treat the NK cells, but I don't know whether its because of the fear of the surgery or its the right decision for my body.

I am seeing Leah next Saturday, I so missed her, mostly the talk, I've seen the other two but seems can't communicate on the same level with Leah. So I am keen to hear her opinion on this. Its great to know herbal can also treat this to some extent.

Sara, you know what, in order not to regret, I guess I just have to bite the bullet and get the surgery done. I wonder what else will pop up after that. What you suggested is exactly what I have in mind atm, maybe just do one more stim cycle given I am used to the lab and facility here, then get fibriod done, during the recovery time, I could seek treatment from Dr. Sack. I asked the same question to Dr. Lok, because biopsy has to be done in the D24-26 of the cycle, it might be hard to do it at the same time with the surgery.

BBT, I have learnt in the past that you can't just take the words straight from your FS' month, you need to digest, interpreted and then decide yourself. The dosage on FSH is a perfect example, I know if I didn't suggest, it won't be changed. So I am happy to see some progress and proves I made the right decision. I guess in this instance, I have more dealings with my FS and haven't with Dr.S. Although I've heard so many people raved about him, I have to admit I don't have enough confidence in him yet, after all, we only met twice and second time I was in shock with my result so didn't get the most of the consultation. Also he himself seems trying to cover himself and set the tune of the treatment in the first place, saying its still early days and no concrete research to prove it yet. I guess that adds a little more anxiety from my side. If the one who is treating you is not sure, how can you be fully convinced. But again, like Holly mentioned before, he could be just saying that because Im under another doctor's care.

Well, guys, I still don't know what to do yet, but I feel a little bit better, you don't know how much your posts helped me in a way. DH said just sleep on it, the decision hasn't arrived yet but I hope it will come when timing is right.

[Jodsan]

Cuddlepie - I just thought I would pop in here to let you know that I just got a faint BFP on my first cycle of Prednisone. I too had a feeling my immune system was being overactive and attacking potential babies. I dont think I would have got there without the prednisone to hold my immune system at bay. I personally think you should keep pursuing this angle. Trust your instincts.