High Natural Killer Cells #7

[Cathy69]

And Ruby I will also add my agreement about getting more testing. I have psoriatic arthritis and was vehmently told by my FS over 4 years that it would have no impact on TTC but apart from an initial BFP, 9 other cycles were unsuccessful. I saw Dr M and (along with a few other changes) I am now 22w. I firmly believe that Immune issues are a signficiant impact and that you should 'cover all bases'. An investment now in time and tests is much better than another set of cycles that end up in disappointment. Good Luck.

[Ruby16]

Thanks so much for all the responses! I only wish I'd pushed harder prior to my first cycle......I think my head was spinning after the 2nd MC and I thought that IVF was going to be the silver bullet we needed, and I think I simply forgot about the immune testing TBH......

I do remember my FS doing the MHTFR tests and a few others that I have seen on some posts/pics from this thread prior to starting, so maybe he did take me a little seriously.

I called to discuss with FS yesterday, but he was about to board a flight, so chatted to his nurse, and she didn't sound like it would be a problem, would just need to do a biopsy and more bloods she said. She said that as from his notes from initial consult, as I'd only had 1 MC at that stage he didn't think we needed to go down that path just yet.....

I'm with Genea, has anyone had any experience at going through them for this type of stuff? What is the difference between the testing that they would do vs Dr M? If I did see Dr M would they need to work together? Would I need to tell my FS? Do I just see Dr M and not tell my FS?

Not that I want to do this behind his back, but to be honest I wouldn't know how to broach the subject of seeing another specialist- feels like I am discounting his expertise almost? And I know that after my experiences with medical professionals in the past I need to advocate for myself- I just feel so awkward about it :/(self diagnosing Coeliac disease and then finally after 12 mths of being super sick & being told I was being 'ridiculous' (no not kidding), finding a Dr that would test me- as it is 'rare' and I couldn't possibly have that now, being almost 30; And struggling to get a Dr to believe that I had Asherman's as it too was 'rare', after a missed MC, 2X D&C's with infections and suddenly an absence of AF, and finally after battling with another specialist who told me that reduction in AF was common at my age (WTF??? I was 37 not 57!!)).

Really does your head in at times!! Anyhow, I must say, I am soooo grateful for these sites, and the women that offer their experiences and help at times when you are so stressed and unsure. It's horrible to think that there are so many of us on this horrible rollercoaster, but it is comforting knowing that there are others that have been there and can help.

Thanks again, Ruby xo

[Lillac]

Hi Ruby, I am not a regular on this thread so I hope the ladies don't mind me crashing in. I went to see Dr M after 4 failed cycles and he diagnosed me with a mild elevated level of NK cells and put on his prednisone/clexane protocol. It did work as I got a bfp but unfortunately I've miscarried recently.

I can't comment on auto immune diseases or ashermans as I do not have this but please be mindful that some women may need 3-4 stimulated cycles + FETs to get a bfp, even if they do not have any additional immune issues. When I fell pregnant with my son it took 4 cycles and there was 'nothing' wrong me me.
This is the sad reality of IVF and its hurts because we put so much effort and hope into each cycle.

Re- telling your own FS. I've recently had a similar experience where I told my FS that I was getting some immune testing through Dr M. I didn't want to lie to him or go behind his back, however It lead to all sorts of issues as my FS does not believe there is enough evidence to warrant use of immune treatment.

My FS accepted that I was going to use Dr M's recommendations but is not happy about it.
I guess what I'm trying to say is tread carefully about what to say to your FS but at the end of the day it's your body, your money, your embryos so you make the final decision.

[Miss Sagi]

Ruby, let your FS deal with the IVF stuff and let Dr M deal with the immune stuff. This is what each of them specialise in. Different FS's will do different "immune testing". Get a copy of the results and send them to Dr M, he'll probably send you off for more tests. They don't need to work together, you manage that, but I always let my FS"s know about Dr M. FS's don't have to believe in immune issues, as long as you do and you're getting the right treatment plan. I wasted 9 cycles before I found Dr M and after I told my FS about him, she said she did immune testing on me, but her type of immune testing was very different to the true immune testing.
You should also read a book that we've been talking about recently on the thread, "Is your body baby friendly". This will give you an understanding of how immune issues affect conceiving and staying pregnant and also discusses treatments. Dr Beers was Dr M"s mentor.

[Ruby16]

Thanks @Lillac and sorry to hear of your MC.

[BB77]

Ruby,
I was with genea. They have lots of patients who see dr m alongside them, myself included. My fs at genea was actually the one who suggested dr m to me after a number of failures. She did some testing but not as much as dr m.
Lillac, sorry about your mc. It's so tough xx

[Lillac]

Thanks ladies, I feel heartbroken and a little scared as we are reaching the end of the road soon for ttc#2

[Ruby16]

Thanks @Miss Sagi & @BB77- I will def be looking into the book, and will give Dr M's office a call this week to see when I can get a phone appointment.


BB77 if you don't mind me asking is it just through your particular FS at Genea that a heap of women are seeing Dr M? If so can I ask which FS this was? Happy for you to PM me if you were unsure about posting.


Thanks again

[BB77]

I'll pm you. Not sure of protocol regarding naming doctors on here

[Sue77]

Hi lovely ladies

I haven't been active on this group for a long time as we were diagnosed with a partial da alpha gene match after being on the IVF journey from almost 8 years, having n number of IVF cycles, producing normal blasts and 2 miscarriages. I was very sad and angry about all this, as to why no doctor was able to diagnose it earlier. I got a little courage today , so I thought I will share my story as it was getting very hard fighting it all alone. I am sorry for the long post, but I need to share my feelings

We were always considered unexplained infertility. Our first cycle was with mivf which resulted in 2 pregnancies , both of which resulted in miscarriages due to random chromosomal abnormalities. Did more cycles there and did pgd , but no success.

We moved to Monash ( LB) , who advised to take my embryos to blastocysts unlike mivf as I had a lot of eggs and embryos , but she wanted to choose the best ones.
So we made 4 blastocysts from 2 cycles and sent them for pgd. 2 were absolutely normal and 2 came out as inconclusive result. We were very happy and hopeful that we had made normal pgd tested blasts as we thought making normal blastocysts was our only hurdle. Did 4 fet with these blasts and always had a neg result. We decided to do another fresh cycle as I thought I would bank embryos due to my age ( I am 38) we made 2 blasts which are still frozen and we didn't do pgd on them.

In the meanwhile, when nothing was working for us, lovelies like blondeinbrisvegas and lilypily suggested that we should consult dr M in Sydney and also see dr Wazza in Queensland. I did that and dr M found out we have high natural killer cells (17) and there was no point transferring those 2 embies without a immune protocol. We sent the results to LBs office but have never heard back. I have nothing against her as she made normal blasts for us and sure is a very competent doctor, but after 4 failed attempts, she lost interest, gave up on us and said that I think the cosmic forces need to work for you . So we decided it's time to change docs. We saw dr NL at Monash and took dr M's findings with us. He did more tests on us and found out that we have partial da alpha match , that's why it's raised your natural killer cells and implantation is not happening and will not happen unless treated.( at least some one in 8 years provided with a reason other than egg quality)

Now he gave us choices, he said we can either do the very aggressive immune protocol consisting of intralipids, LIT, ivig etc, go for a donor sperm( which we don't want to) or arrange a gestational surrogate who can carry your baby ( with my eggs and DH sperm). I also had a brain surgery between these ivfs for the removal of a benign cyst. Thankfully it was not cancerous , but it left me with a lot of weaknesses in my body. Looking at my medical history, he suggested that the safest Option with the best success rates will be gestational surrogacy.

We were shocked with the findings. We wasted 8 years in transferring embryos which never had a high chance of implanting and no one tried to check why. Now we are searching on surrogacy options. Commercial surrogacy is illegal here In Aus.. But can be done overseas. The cheapest option is India ( which is still very expensive) . It's abt 30000 dollars plus airfares etc. we are planning to do another cycle here , collect some more embies, have them pgd tests and send them overseas for gestational surrogacy. We are flying down to qld to see Wazza on the 3rd of November to seek his opinion. I mean I don't know what direction life is heading to, what's right or not

I am again sorry for the very long post and thank you for reading it. There is no one else who can understand all this. From the bottom of my heart, I want to congratulate everyone who has achieved their long awaited bfp, very sorry for the ones who have had losses or a bfn, hoping you get the courage sooner than later to try gain and wishing all the best to all those lovelies who are still ttc like me.