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Bath1975

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Saturday, June 4th 2011, 10:59am

More immune results - can anyone help?

Hello ladies!

I had the immune tests done on 25 May and the results have started to roll in. I wondered if anyone more experienced could help me interpret them? The ones I have got so far are:


NK Assay (% killed) Panel

50:1 - 18.0
25:1 - 11.4
12.5:1 - 7.9

These were all within the normal limits specified but am I right in thinking Dr G likes them to be below 15?


IgG conc 12.5 50:1 ** 8.5%
IgG conc 12.5 25:1 ** 8.5%
IgG Conc 6.25 50:1 ** 9.2%
IgG conc 6.25 25:1 ** 7.1%
** > 10% reduction in killing at each effector/target ratio

I don't really know what this is showing. Is it anything to do with how IVIG works for me?

------------------------------------------------------------
%CD3 - *87.7% (slightly high - normal limit 60 - 85) - Not sure if this is high enough to worry about?
CD19 – 3.2
%CD 56 - 6.1
%CD19+cells, CD5+ *21.9 (high – normal limit 5 – 10) - This is high and from what I have read probably related to my immune condition. Does this mean I'll need IL/IVIG?


NK Assay W/Intralipid
50:1 w/Intralipid 1.5 mg/ml 11.2%
25:1w/Intralipid 1.5mg/ml 7.7%

I think the above shows ILs work for me as it has brought both levels
down? Would that apply to bringing down CD19/CD5? Please don't let me
need IVIG!!



Leukocyte Antibody Detection
Flowcytometry Negative
(T-cells) IgM+ 1.3%
(T-cells) IgG+ 2.0%
(B-Cells) IgM+ 10.2%
(B-Cells) IgG+ 39.3%

I have NO idea what this means? The limit given says 'Negative' - does this mean anything
not negative is bad?



TH1:TH2 Intracellular Cytokine Ratios
TNF-a:IL-10 (CD3+CD4+) - 25.8% (Normal limits 13.2 – 30.6)
IFN-g:IL-10 (CD3+CD4+) - 11.9% (Normal limits 5.8 – 20.5)

These are both within normal range given but I think I read that it should be below 25% so
maybe high, if you're being picky?

Still waiting for the DQAlpha and thrombophilia tests (MTHMFR?).

Phew. If any experienced immunies, or others that actually understand their test results can explain anything
I'll be very grateful. Otherwise I'll be cracking the Dr Beers back out
:snigger: My interpretation is that so far most things are normal, some just teetering above normal, except the CD19+/CD5 which is definitely high.

Any advice appreciated, particularly on the things I don't even recognise!

:thanx:
2 Fresh and 1 frozen ET in 2010 - All :BFN: :
2 x IVF in 2011 (one immune) - Both :BFN: :bawl:
DE cycle at Serum with immunes - October 12 - Guess what? :BFN:
DE FET March 2013 - :BFN:
DE cycle -October 2013 and FET November 2013 - :BFN:
DD cycle - last go - BFP!!!

This post has been edited 1 times, last edit by "Bath1975" (Jun 4th 2011, 11:03am)


ruthie

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Saturday, June 4th 2011, 12:15pm

Hello my lovely,
NK Assay (% killed) Panel

50:1 - 18.0
25:1 - 11.4
12.5:1 - 7.9

These were all within the normal limits specified but am I right in thinking Dr G likes them to be below 15?


That's my understanding too, but those levels aren't that bad.

IgG conc 12.5 50:1 ** 8.5%
IgG conc 12.5 25:1 ** 8.5%
IgG Conc 6.25 50:1 ** 9.2%
IgG conc 6.25 25:1 ** 7.1%
** > 10% reduction in killing at each effector/target ratio

I don't really know what this is showing. Is it anything to do with how IVIG works for me?


That's exactly what that is showing. They are putting different IVIG concentrations with the NK cells and looking at how their killing power is affected. In each case IVIG reduces the killing power of the NK cells so that's good.

%CD3 - *87.7% (slightly high - normal limit 60 - 85) - Not sure if this is high enough to worry about?
CD19 – 3.2
%CD 56 - 6.1
%CD19+cells, CD5+ *21.9 (high – normal limit 5 – 10) - This is high and from what I have read probably related to my immune condition. Does this mean I'll need IL/IVIG?


The first one don't worry about. Steroids will bring that down as it's a tiny elevation. The second one is more of an issue, so may well need ILs or IVIG.

NK Assay W/Intralipid
50:1 w/Intralipid 1.5 mg/ml 11.2%
25:1w/Intralipid 1.5mg/ml 7.7%

I think the above shows ILs work for me as it has brought both levels
down? Would that apply to bringing down CD19/CD5? Please don't let me
need IVIG!!


It does show that ILs work for you. IVIG worked a bit better, but ILs worked v well too, so hopefully he would go for ILs. Remember, you don't have to have any of the drugs. You could ask for ILs instead of IVIG, and he can't force you.

Leukocyte Antibody Detection
Flowcytometry Negative
(T-cells) IgM+ 1.3%
(T-cells) IgG+ 2.0%
(B-Cells) IgM+ 10.2%
(B-Cells) IgG+ 39.3%

I have NO idea what this means? The limit given says 'Negative' - does this mean anything
not negative is bad?


This is looking at your blocking antibodies, to your DH's genetic material, in that you're not making them when you should. Your T cell Ig G is below 30% which is what they aim for. He might recommend LIT for this. Bear in mind that a lot of clinics now don't do LIT, and just rely on steroids/ILs/IVIG to sort the problem. Dr G likes LIT though, so he might discuss that with you.

TH1:TH2 Intracellular Cytokine Ratios
TNF-a:IL-10 (CD3+CD4+) - 25.8% (Normal limits 13.2 – 30.6)
IFN-g:IL-10 (CD3+CD4+) - 11.9% (Normal limits 5.8 – 20.5)

These are both within normal range given but I think I read that it should be below 25% so
maybe high, if you're being picky?


I've always been told they like it to be below 30. Those levels look fab. The best mine has ever got is 22 after tons and tons of Humira, so worry not. THis is a good thing as Humira is a bugger and delays your cycle.

There are much worse results out there, but there is enough there to maybe explain your BFNs. When do you speak to Dr G next?

xxxx

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Saturday, June 4th 2011, 12:17pm

Hi Tania, welcome to the world of the immunies!!!

I'm sure that Ruthie will be along later to give a more detailed explanation and a scientific one, but just a quick reply from me. I'm with Dr G also and I think from first look, I have similar results to you - you might want to check my previous threads on here. I would say that he will definately give you steriods and intralipids. As for IVIG, you are right about that section and he will make a decision based on that as to whether IVIG is better for you than intralipids but if you respond well to the intralipids then he will go with that. He told me that he rather gives intralipids now than IVIG if he can (if it's suitable).

With your leukocyte result, it looks to me that you have low LAD which isn't great (I have it as do lots of other ladies on here though so don't worry). He will recommend LIT for this. Again, have a look through my previous threads for more info on LIT (Beanie is also going to have it). Depending on your DQ Alpha results he will either use your DH's blood or donor blood (it will only be donor blood if you are a complete match).

You will have to wait for your MTHFR result to see what that is and whether he will also give you clexane.

Are you going to cycle with him or elsewhere? Good luck with it all. xx

AMH 8.4 (me=36). 6 cycles clomid. Immune issues.
1st IVF cycle April 11 - canx due to endo cyst.
2nd IVF cycle with immune meds May 11 :BFP: [zx076] seen 5wk5d, 8wk5d, 12wk
"There can be miracles when you believe"
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Saturday, June 4th 2011, 12:19pm

Ruthie must have been typing at the same time as me!!!

AMH 8.4 (me=36). 6 cycles clomid. Immune issues.
1st IVF cycle April 11 - canx due to endo cyst.
2nd IVF cycle with immune meds May 11 :BFP: [zx076] seen 5wk5d, 8wk5d, 12wk
"There can be miracles when you believe"
My diary


Maria72

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Sunday, June 5th 2011, 7:43am

Hi Tania good answers already from Ruthie & fluffy. Dr G will tell you more when you see him next.

The good thing is you don't need humira, which is expensive and delays tx.
Good luck!
:xxx:

Bath1975

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Sunday, June 5th 2011, 10:40am

Ooh thanks ladies, thats really helpful :D

As always, Ruthie explains the scence very well and thank you for spending the time typing all your replies. Very good news about the Humira, I have heard horrible things about it. Hopefully then Dr G will go for ILs rather than IVIG then, am I right in thinking that as my CD56 is low he may opt for a less aggressive option?

Fluffy, thanks for your reply, I'll have a look through your posts as it will be good to hear from someone who has tx'd with Dr G.

Thanks Maria!

I haven't arranged my follow-up with him yet as I was waiting for all my results and also I am going to try and get karyotyping and am doing the hidden C test next week. I am going to try and see him within the next few weeks though. I am 99% sure I'll cycle with him. I want to change clinics and I think the best way is to go with him for now. I asked if if I'd be able to cycle with him but have some of my tests/treatment locally. I know healthcare at home do ILs at your house for £280 and its £350 plus train plus a day off work to have them with him so hopefully I could do that and maybe some other things?

I have just checked my receipt and I assume the thing that says 'F2SM' (cost £250) is the MTHFR and other thrombophilia tests - does anyone recognise what that is?

Thanks again you very helpful and lovely ladies! :xxx:
2 Fresh and 1 frozen ET in 2010 - All :BFN: :
2 x IVF in 2011 (one immune) - Both :BFN: :bawl:
DE cycle at Serum with immunes - October 12 - Guess what? :BFN:
DE FET March 2013 - :BFN:
DE cycle -October 2013 and FET November 2013 - :BFN:
DD cycle - last go - BFP!!!

Bath1975

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Sunday, June 5th 2011, 10:47am

Ooh Fluffy, have just noticed you're in the 2ww! Wishing you loads of luck and hoping those immune meds have done the trick!

:goodluck:
2 Fresh and 1 frozen ET in 2010 - All :BFN: :
2 x IVF in 2011 (one immune) - Both :BFN: :bawl:
DE cycle at Serum with immunes - October 12 - Guess what? :BFN:
DE FET March 2013 - :BFN:
DE cycle -October 2013 and FET November 2013 - :BFN:
DD cycle - last go - BFP!!!

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Sunday, June 5th 2011, 11:53am

Thank you hun. xx

I didn't cycle with him (am doing IVF in Italy) but am with him for the immune side. I have to say though that once he had done my prescriptions etc that I haven't had alot of support from him (ie: he won't always reply to emails). But I'm hoping what he's given me and what I've already done/am doing with do the job!!

I think he will def let you do the intralipids with homecare and probably other things relating to your cycle you could do elsewhere aswell (scans/bloods/other tests). He seems quite flexible in that way. Don't know what that code is on you receipt but think it was for the MTHFR etc at that price.

:xxx3:

AMH 8.4 (me=36). 6 cycles clomid. Immune issues.
1st IVF cycle April 11 - canx due to endo cyst.
2nd IVF cycle with immune meds May 11 :BFP: [zx076] seen 5wk5d, 8wk5d, 12wk
"There can be miracles when you believe"
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Sunday, June 5th 2011, 9:56pm

Hi Tania
Good to see that not too many things have come up for you although it looks like you need LIT. Mind you as Ruthie said you could use other drugs to treat this.

I have just had my first Humira jab tonight and now I'm reading all these negative things about it in terms of the effects it can have :sadface:

The £250 is the MTHFR. I didn't know what this one was either and didn't receive the test result in the post. I had to ask Dr Gorgy for a copy.

Make sure you ask lots of questions and are clear about what he is sayiing at your FU appointment, as he doesn't give you any written instructions to go with the prescriptons. I had my appointment before I'd done the C test.

Good idea about having the Intralipids done at home to save money but I guess having other tests/bloods/scans done would mean having to go to another clinic?

x
Beanie5
Me 38 [zx076] DH 43
(ICSI x 4, FET x 6 - 2 early losses)
Tx no. 10 - Immune Protocol through Dr Gorgy :BFP:
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Bath1975

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Sunday, June 5th 2011, 10:19pm

Thanks Beanie! I wonder why you don't get sent the MTHFR results? Did you get DQ Alpha sent to you? Thats the other thing I'm waiting for. Perhaps I'll phone tomorrow and chase the MTHFR.

Not sure how bloods/scans thing will work. I will wait and see how often he'd want them. I just thought it might be cheaper/easier getting some done locally, even if I have to pay for them (especially as we have to pay for bloods separately anyway) if he does them every day or every other day. Did he tell you how a cycle with him would work?

I know what I wanted to ask. When you got your results had Dr G highlighted anything? I have read quite a few posts, and met someone yesterday, who had certain things already highlighted on their results but mine haven't and I'm not sure if Dr G has seen them or not. My LAD is really low and I'm sure he would have highlighted that?

Don't worry about the humira. Loads of immunies have that and I'm sure it will be fine. Fingers crossed it will do the trick! xfingers
2 Fresh and 1 frozen ET in 2010 - All :BFN: :
2 x IVF in 2011 (one immune) - Both :BFN: :bawl:
DE cycle at Serum with immunes - October 12 - Guess what? :BFN:
DE FET March 2013 - :BFN:
DE cycle -October 2013 and FET November 2013 - :BFN:
DD cycle - last go - BFP!!!

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Monday, June 6th 2011, 10:08pm

Hi Tania

I got the DQ Alpa result in the post. I don't know what order it all came in as it was all there waiting for us when we got back from holiday.

He didn't highlight any of my results. I think that one copy is sent directly from Chicago to the clinic and one to you. I'll be interest to hear what you find out about having bloods/scans done locally. It's a good idea. I have no idea what cycle he has planned for us and how often he scans and does bloods. He didn't seem to want to discuss that when we went for the follow up. He concentrated on the drugs that I had to take before I could start a cycle, which was Humira and LIT. When I went for the first appt he said that he wanted to do an aqua scan but that hasn't been mentioned again.

I do find it all a bit unclear and that's why I mentioned about making sure you write down everything and question if you don't understand something. I tried to ask about the IVIG but he didn't want to discuss that until I had the Humira and LIT done. Maybe the amount of IVIG will depend on how I respond to the other drugs.

Welll so far no side effects with the Humira. The info that came with it gave a very long list of side effects but I'll try to ignore them :smile:

Probably worth giving the clinic a call to see if they have had your DQ Alpha result as they will then send you a copy. THey won't give you the result over the phone.

Goodluck Fluffy with your 2ww!
Beanie5
Me 38 [zx076] DH 43
(ICSI x 4, FET x 6 - 2 early losses)
Tx no. 10 - Immune Protocol through Dr Gorgy :BFP:
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