Immunology Testing

[*Tam*]

Just wondering if anyone knows anything about the immunology area/testing.

With my lack of success (both falling pg, but also keeping pg) I've started to think a bit about this area.
I have a doctor review coming up & was thinking it could be something to talk about.

Thanks in advance.

[firemansgirl]

Hi Tam.. i don't know anything about it, but have you searched the web and any international IVF sites??? I hope you get there soon matey, and have a wonderful little 'un for your daughter... leis xx

[sushee]

Tam,

I've emailed SuziQ about this thread. She should be able to help. It seems like more and more LT IVFers are looking into this, so this thread would be good info for anyone who's been trying for a while.

Editing to add that anyone looking into immunology tests should also check this thread out by Flowerchild:

Recurrent Miscarriage and Fetal Death Information

[SuziQ]

Hi Tam
Yes, I know about immunology issues.
In May this year I went to a Reproductive Immunologist, Gavin Sacks (IVF Australia, City). He did a humungous amount of blood tests - 14 vials in one trip :eek: . They came up clear. I have the list of things tested and will post that separately.
He then performed a uterine biopsy which showed I had a higher than normal amount of Natural Killer cells in my uterus.
In very very simple terms (trust me, this is a very complicated area), NK cells are white blood cells that kill off foreign bodies eg. cancer, viruses etc. They occur naturally in the uterus to prevent an embryo taking over the whole body :eek: . They're at their most prolific between CD19 - CD25. When they're too efficient, the result is that they see everything as being an invader - including embryos.
There are various protocols and treatments you can try but his protocol for me will be steroids prior to ET and Clexane and Baby Asprin post ET.
It's worth remembering two things here....
A lot of RE's will tell you they've done BTs to test for some of these issues but it really is an extremely specialised field and doubtful that your RE will have access to the method of testing.
The other thing is that this is still in it's research stage. As your RE may, no doubt, tell you as most IVF specialists are not "on the bus" with this treatment.
However, I belong to another board full of 'mature' women like me also with 'unexplained' infertility or repeated mc who now have their bubs or are pg after trying this treatment.
Unfortunately, I only know of two doctors on the whole east coast who do this, both in NSW. Not sure about WA but know that there is nobody in QLD or Vic.
I'm off to eat now but will come back in later and post the things that the BT needs to cover.
In the meantime, I'm not sure if I can post a link to a brilliant (but head-spinning) site but if you google Dr Beer+immunology you'll find the site for the pioneer of all this who passed away a few months ago. Or google Sacks+repeated+miscarriage, you should come up with something.

[*Tam*]

Or please PM me the link, thanks Sue

(sorry, I'm a bit slack)

[SuziQ]

I've PMd the link Tam - you're allowed to be slack!
I forgot to add that I also had glandular fever as a teenager,endometriosis, my mother had an overactive thryroid, one grandfather had rheumatoid arthritis and the other had spondalytis. These are all auto-immune diseases - I never had a chance of falling pg naturally!!!
I have links to lots of sites.

[firemansgirl]

hey gals can someone please pm me the link also... thanks leis xx

[firemansgirl]

PS.. i just checked Dr Sacks out on the IVF Australia website.. he certainly is a very very knowledgeable guy.... might keep his name up my sleeve.. maybe if we all go to him, he will do us a bulk discount!!!!!!

I wonder if many other IVF or FS support his way of thinking on recurrent m/c? Any opinions or first hand knowledge gals??? leis xx

[SuziQ]

Not sure there are too many that support him but there are more coming on board. Even my own RE (who works for IVFA as well more or less told me it was a waste of time!)
He was on a documentary on NK cells and mc on SBS on the 11th July called "Waiting for a Heartbeat" , filmed when he was in London.
There is another RI in Sydney Dr Matthias (sp?) that a lot of the girls have been to and had success with as well. He follows a different protocol but has good results!
I found my receipt for my immunology BTs. I've listed the Item # as well. If you want the full names I can supply them but some are awfully long! You should be able to have these done by your normal pathology centre.
#PROTS NH APC NH PROC NH ATH NH No item #
FBE 65070
LUPA 65137
GLUC 66500
INS LH FSH TSH TEST SHBG 66734
HCY 66752
PHOS AB 71117
ENDOMYSIAL AB GLIA GLIG 71164
CYT KARYO 73289
FVL 73308
PEI 73907Query...this is on the bottom SCP-985 (not sure what that is).
Please remember, if these come back 'within normal range' there is another BT that needs to be done - it's the one that's the secret cloak and dagger one that needs to be done by a RI:
Peripheral blood NK cells
Thromboelastography.Again, I tested 'normal' for this one too. It was only the biopsy that showed up the correct results.
The steroid is Prednisone. Some IVF doctors use it as a matter of course now, not sure why. It's Gavin's preferred drug. Dr Matthias prefers IVIG, but there is a lot of not so nice data around about it as it's made from animal products...I think....probably best if you google that if you're interested.
Leis, I'll PM you.

[Willow]

Hi Girls, I don't know anything about this area of testing, only early days for us, but wanted to say that Gavin Sacks is the new FS at IVF Australia (city) I've been to see very recently.

He is doing a lap surgery for me next month (hopefully) and I've struggled with this approach a bit. The more I read about things like this and how knowledgeable and experienced he is, the more reassured I feel that I am taking the right steps.

So just wanted to say thanks for posting this, it's helped me out too in a round a bout way!

[butterfly_warrior]

I've also been watching with interest, even though I'm only in the early days. I'm pretty sure I'm seeing my first cycle of clomid completely fail to make me ovulate.

What concerns me in reading this, is that 6 years ago I developed chronic fatigue syndrome, at which point my body chemistry was completely screwed up. Since then, the energy problems have resovled, but I've been diagnosed with a weird form of rheumatoid arthritis that nobody can yet identify. I've been tested for what feels like absolutely everything under the sun, and everything comes back clear... except my blood tests always show elevated ESR and C-reactive protein, which I'm told indicates some sort of inflammatory process going on in my body. Add to that what should be mild PCOS (I'm not overweight, my ovaries are polycystic in appearance, yet the only hormone that did not test within normal range was free androgens, and that was only slightly elevated) but seems to have a very severe impact on my cycle.

I guess my gut feeling is that natural conception isn't going to happen for us, and my peculiar health conditions are going to complicate things, even though my GP, my rheumatologist and my gyn (who I personally think is completely useless) say otherwise. My GP has indicated that when it comes to referring me to a fertility specialist, his preference is for me to use David Knight. Thoughts? comments?

BW

[SuziQ]

Hi BW
Which clinic does David McKnight work out of? I'd hate to go against what your GP wants but unfortunately, as great as our GPs can be, they still really don't know much about infertility + autoimmune problems.
If you suspect you may have immunology issues, and it sounds as though you may have grounds to, it makes sense to go to Gavin or Dr Matthias. Otherwise, if Dr McKnight is not a believer in this, you'll only be wasting more time and $$$ going around in circles. You'd be killing two birds with one stone by going to Dr Sacks - infertility + immunology.
Not sure where you live but he works out of IVFA Kogarah (St George Private I think) and IVFA City. The city clinic is too easy to get to, it's above Wynard Station. You'll need to go to St George Public Hospital for the final BT.
Good luck, he is a lovely man.
PS I don't get a commission from Gavin for recommending him either!!

[butterfly_warrior]

David Knight heads up Next Generation Fertility.

Unfortunately, we live out at Windsor, so we'd have over an hour's drive to get to the city clinic.

I suspect that just for convenience sake, we are going to have to go with someone more local, and I'll just have to make sure I ask the right questions... and then make the trek into the city if it appears necessary.

BW

[SuziQ]

Ah, yes you're probably right.
I have a feeling David McKnight was one of the doctors in the 'walkout' at IVFA (and rightly so I guess) to start up Next Gen. Gavin has only been out here a little while from London so I doubt there'd be any 'IVFA' type speedbumps in your way between the two docs.
Good luck!

[butterfly_warrior]

I know he did leave another clinic to start his own, but I can never remember which one.

I guess there are lots of nasty politics involved amongst the different clinics.

BW

[Willow]

Can someone fill me in on the IVFA 'walk out' ?? Just curious as if we need to go the IVF route, I will definately consider staying with Dr Sacks at IVFA (although location and cost will definately come into the equation).

[SuziQ]

Hi Willow
It was before I was with them and I think it was all the staff from the Westmead clinic - nurses too. I think it came down to the fact that those who left were tired of IVFA becomining just a money making corporation. I'm staying with IVFA as well as I'm on the central coast and access to a lot of different clinics isn't an option.
I'm pretty sure I found out about it in here, it happened about 18 months ago or so. Maybe if you do a search you'll find it?
Sorry I can't be more help but somebody else may know more about it.

[~Poppy~]

Originally Posted by butterfly_warrior

I've also been watching with interest, even though I'm only in the early days. I'm pretty sure I'm seeing my first cycle of clomid completely fail to make me ovulate.

What concerns me in reading this, is that 6 years ago I developed chronic fatigue syndrome, at which point my body chemistry was completely screwed up. Since then, the energy problems have resovled, but I've been diagnosed with a weird form of rheumatoid arthritis that nobody can yet identify. I've been tested for what feels like absolutely everything under the sun, and everything comes back clear... except my blood tests always show elevated ESR and C-reactive protein, which I'm told indicates some sort of inflammatory process going on in my body. Add to that what should be mild PCOS (I'm not overweight, my ovaries are polycystic in appearance, yet the only hormone that did not test within normal range was free androgens, and that was only slightly elevated) but seems to have a very severe impact on my cycle.

I guess my gut feeling is that natural conception isn't going to happen for us, and my peculiar health conditions are going to complicate things, even though my GP, my rheumatologist and my gyn (who I personally think is completely useless) say otherwise. My GP has indicated that when it comes to referring me to a fertility specialist, his preference is for me to use David Knight. Thoughts? comments?

BW

Hi I also have PCOS and mine is different from all the others as well. In fact I think my hormones were pretty much like yours. I am not saying that you won't ovulate on clomid but I know I was told that PCOS sufferers who don't ovulate on clomid usually have success on FSH injections. But anyway you still have this cycle to see what clomid can do for you! Don't give up yet!
Fi