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  • "Beanie5" started this thread
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Friday, May 6th 2011, 1:46pm

Immune Test Results

Hi

I have just come back from holiday and have received the results to my immune tests. I am hoping that someone will be able to help me understand the meaning of these results and possible treatments that I may have to have, as I still need to book a follow up appointment with Dr Gorgy. It would be good to go there we an understanding beforehand so that I can prepare my questions!

DQ Alpha Genotype
DH 0301, 0501
Me 0201, 0505
I think that this is good because our genotypes are different but I think the fact that my DH has 05014 may cause problems??

NK Assay (% killed) Panel
50:1, 25:1, 12.5:1 - all within normal limits
IgG conc 12.5 50:1 ** 4.9%
IgG conc 12.5 25:1 ** 5.1%
IgG Conc 6.25 50:1 ** 14.7%
IgG conc 6.25 25:1 ** 13.7%
** > 10% reduction in killing at each effector/target ratio
-------------------------------------------------------------
%CD3, % CD19 – both within normal limits
%CD 56 *16.2 (high – normal limit 2 – 12)
%CD19+cells, CD5+ *20.5 (high – normal limit 5 – 10)

NK Assay W/Intralipid
50:1 w/Intralipid 1.5 mg/ml 25.2%
25:1w/Intralipid 1.5mg/ml 21.3%

Leukocyte Antibody Detection
Flowcytometry Negative
(T-cells) IgM+ 41%
(T-cells) IgG+ 20.3%
(B-Cells) IgM+ 43.4%
(B-Cells) IgG+ 10.4%

TH1:TH2 Intracellular Cytokine Ratios
TNF-a:IL-10 (CD3+CD4+) *61.2% (Looks very high – normal limits 13.2 – 30.6)
IFN-g:IL-10 (CD3+CD4+) *24.3% (high – normal limits 5.8 – 20.5)
Beanie5
Me 38 [zx076] DH 43
(ICSI x 4, FET x 6 - 2 early losses)
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This post has been edited 1 times, last edit by "Beanie5" (May 6th 2011, 1:47pm)


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Friday, May 6th 2011, 2:02pm

Oh blimey that looks complicated - sure someone will be along soon who can help.

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Friday, May 6th 2011, 5:56pm

I can't find mine but yours look similiar.
Your cytokines are high, mine were 85%! For these you can take humira. I have taken it and they have gone down.
Also some of your NK are high. They give intralipids and steroids. They will aslo give you more progesterone after ET.

cytokynes: the immune system is balanced between a TH1 (autoimmune) and TH2 (pregnancy or suppressive response). TH1 predominance can also be associated with reproductive failure.
NK cells:
CD56: Natural killer cells are named such because, unlike T cells, they have an inherent capacity to identify foreign or abnormal self-self and effect their elimination. When their number reaches a certain level they are likely to be associated with reproductive failure
CD19+cells, CD5+ :They represent a class of B cells that is involved in autoimmune disorders (conditions where the body mounts an immune response against a body tissue). Women with elevations of these cells may be at risk for thyroiditis and the premature menopause.

Info from Dr Beer An Introduction to Our Program (link not endorsed by FZ)

I am sure Ruthie will soon come along with a brilliant explanation.
The good news is they have found something that they can treat.
Take care and good luck!
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Friday, May 6th 2011, 6:22pm

Wow this really beats me, I am willing to have immune testing done and it really seems a lot to get head around. I will keep an eye on your thread in the hope I can begin to understand some of this. good luck for your next cycle x

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Friday, May 6th 2011, 6:56pm

Silly me! I have found my results here:
Help with my results needed with all the explanations from the other immunies. Feel free to read.
I have checked and my abnormal NK cells were different ones from yours. You'll have to look in Dr Beer's website and read about them. It's explained really well there.

Sorry I hope I didn't confuse you!
Also check the immunology info board: http://www.fertilityzone.co.uk/index.php…ard&boardID=247

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Friday, May 6th 2011, 7:53pm

Hi Beanie, welcome back!!

Obviously I'm no help with interpreting these as I'm a step behind you, but as Maria says, it does look like they found something and that means it can be treated. Have you got Alan Beer's book? I am just working my way through it and have just read about these genome types. i think you're right that 0501 is not good if either of you has it but I can check my book if others don't come along to help.

Hope you had a fabulous holiday and managed to forget about things for a while!!

Catch up soon xxx
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Saturday, May 7th 2011, 5:56pm

Hi Beanie,

DQ alpha first off. The first thing you have to do is translate the genotype into phenotypes. There is a chart in Dr Beer's book that helps you do that.

From that you come out as 2.1 4.1 and DH comes out as 3.1 4.1

Then you work out what embies you might make. Each embie will get one gene from you and one from DH so the possible embie phenotypes are:

2.1 3.1
2.1 4.1
4.1 3.1
4.1 4.1

From that you can see that 25% of your embies will be identical to you and that is more likely to cause an increased immune response, so in your case you DO have a DQ alpha match, and 25 % of your embies will be affected.

However, there is the other school of thought that goes a bit further. Some people believe that if all the phenotypes end in the same number, ie in .1 or in .2, that can also cause probs. In your case all your phenotypes end in .1. The other issue is that nasty 4.1 number. Dr Beer believes that this is the worst one to have, in that it most closely resembles the proteins expressed by cancer cells, and therefore is an issue. You can see that 75% of your embies have 4.1 and 25% of them are 4.1 4.1

This is all very unproven though remember, and I personally am a bit sceptical about the worrying about even just one copy of a nasty one. For example, look at you and DH. You both have one copy of 4.1, and you were both embies once, and you made it! However, it might provide an explanation for some of your issues.

On the TNF front. Those cytokines are pretty high. Dr G usually recommends Humira when they are that high, and that will bring them down in most cases. If it doesn't, or if it brings them down, but not enough, he will use other drugs too.

Looking at your NK cells, it's not surprising that your CD 56 are high, as they are the ones that produce TNF.

However, your killing power of your NK cells is normal, and they are affected appropriately by IVIG. I can't tell if they are affected appropriately by intralipids, as you need to give the 50:1 25:1 etc results in the NK cell assay to determine that. I suspect though that he will just suggest steroids to bring the levels of the NK cells down, and not worry about IVIG as your killing power is normal.

The LAD is abnormal. Your T cell IgG and B cell IgG are both below 30%. This is what he would give LIT for which some of the girls have had. I think he's about the only doc still doing it though. Most of the other clinics just rely on sorting your NK cells out and go from there.

Hope all that makes sense. If you want any more info about what each individual test means etc let me know. Somewhere in the immune section there's threads about how Humira works, and also about LAD which explain things in more detail.

When do you get to speak to Dr G?

xxxx

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Saturday, May 7th 2011, 6:04pm

WOW Ruthie, I love your answers cos I actually learn something bowkiss

PS: you may also want to check this: http://www.naturalgynae.com/downloads/nav6_fact25.pdf (link not endorsed by FZ)

This post has been edited 2 times, last edit by "Maria72" (May 7th 2011, 6:46pm)


  • "Beanie5" started this thread
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Saturday, May 7th 2011, 7:43pm

Hi Maria and Ruthie

Thank you for your help. It sounds like it was worth me having the tests done! It all sounds a bit scarey and I imagine these drugs are going to add alot to the cost of tx.

With LIT do you know when a donor is needed instead of DH?

I am going to call up and make an appointment on Monday to see Dr Gorgy. I need to check with my manager whether there are any days that I can't take off. Hopefully I can get an appointment within a week.

When I went to see Dr Gorgy he suggested that I have an aqua scan. He gave it another name as well but don't remember the name. He said this would be to check my womb. He said that it is best to have this done just before starting tx as it can have a beneficial affect on thickening th endometrium.

I've borrowed Dr Beer's book off of a friend and have been dipping in and out of it - it's quite mind boggling!
Beanie5
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(ICSI x 4, FET x 6 - 2 early losses)
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Saturday, May 7th 2011, 7:52pm

Ruthie

I forgot to ask. Is this the bit that shows if my NK Cells are affected appropriately by intralipids?

NK Assay W/Intralipid
50:1 w/Intralipid 1.5 mg/ml 25.2%
25:1w/Intralipid 1.5mg/ml 21.3%
Beanie5
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(ICSI x 4, FET x 6 - 2 early losses)
Tx no. 10 - Immune Protocol through Dr Gorgy :BFP:
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Monday, May 9th 2011, 1:08pm

Yes. That shows their killing power after intralipid, but you need to compare it to the actual levels on your NK assay, and it just says all within normal limits on your results. I'm presuming that you wrote that, and they have given you the numbers, or maybe they've written that. Either way you need to compare the numbers to see what the ILs are doing.

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Monday, May 9th 2011, 6:48pm

Hi Ruthie

I get it now. Yes I wrote that. The results were;

50:1 18.6%
25:1 12%
12.5:1 8.7%

Surely they should go down with Intralipids??
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Monday, May 9th 2011, 11:29pm

Thank you Ruthie!
Always learn so much from your explanations!
Good luck Beanie!
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Tuesday, May 10th 2011, 7:27pm

Yes they should ideally. When you look at the corresponding results with IVIG you can see that the killing power percentage is dramatically reduced. Not sure why they'd be higher with ILs. I doubt it's a problem, but it is an indication that you'd want IVIG rather than ILs I guess. However your killing power of your cells isn't too bad anyway. They do say they like it to be below 15% so he might quibble over the 18, but I don't know at what levels they get out the IVIG, or when they just rely on steroids. As your killing power isn't too bad, and your actual NK cell levels isn't too bad either, he might just go for steroids. Who knows!

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Tuesday, May 10th 2011, 8:19pm

Thanks Ruthie. All will be revealed at our appointment on Tuesday :)
Beanie5
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Saturday, May 14th 2011, 11:46am

Hi Beanie, good luck with your appointment on Tues. Ruthie has answered so well as always and I've also learnt more things from the info that she and Maria have sent! Very useful.

I'm also with Dr G. It's good that you are seeing him face to face to have your review of results. Would be a good idea if DH also goes with you and if you take a note pad to write things down after he says them. I had lots of questions after having my results consultation (which was by phone and almost impossible to understand him) and had to make further calls and emails to him. He isn't very good at responding to emails so it's a better idea to really understand everything before you leave his office! Also DH and I had problems reading his writing on his prescriptions and directions and had to push to get him to rewrite all the info by email so maybe ask if you can also have a printed copy.

As Ruthie has said, he probably will give you steriods. With regards to IVIG and intralipids he will weigh everything up and make a decision which is best for you. For example, I responded better to IVIG but because of other factors he thought intralipids would be enough in my case. And intralipids are so much cheaper, easier and safer so he always likes to give them rather than IVIG if he can. He will definately recommend that you have LIT. Whether you have it or not is up to you. You might want to do some reading up about it before you go. You have a DQ Alpha match with your DH so unfortunately you will have to use donor blood. I think Dr G tries to match you up with another couple who are doing LIT for the same reasons and then you swap blood so to speak. Just to warn you, at the moment Dr G has a long waiting list for LIT. His receptionist told me a couple of days ago that there are 40 people on the list at the moment and you might also have to wait longer to find a suitable donor.

My DH and I are not matches but my DH has got 0501 (4.1). I don't have a copy of Dr Beer's book but I wonder if someone can come along here to give an explanation about why this can cause a problem. Am abit worried about it myself to be honest as we are not able to have the LIT before our cycle which we are about to go into.

xx

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Monday, May 16th 2011, 9:18pm

:goodluck: tomorrow for your appointment Beanie.

:xxx:

Me 40 DH 35 TTC 10yr
peritoneal mesothelioma, cystectomy 97 & 00
peritonectomy, lost both tubes & most of left ovary Aug 07


Dec 07 BFP b/ov m/c 9.6wk
July 08 BFN
Dec 08 BFP b/ov m/c 9.6wk

July 09 BFN
Nov 09 BFP 2 x sacs 1 b/o 1 no hrtbt m/c 9.2wk
May10 BFP at 8+4 m/mc @10wk scan ERPC

Found: High NK cells, DQ Alpha match, LAD neg & PAI-1 pos...

NOV 2010 - Immune IVF at CARE Manchester
:BFP: [zx076] :girl: born 25/8/11

OCT 2012 - Immune IVF at CARE Manchester
:BFP: [zx076] :boy: born 24/6/13

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Tuesday, May 17th 2011, 6:41pm

So, how did it go????


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Feb 15 Shock BFP (8 o)

  • "Beanie5" started this thread
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Wednesday, May 18th 2011, 10:12pm

Thanks ladies and thanks fluffy for your advise

The appointment went okay but he rushed us and wasn't that talkative. I think that maybe he is better in the mornings, as our last appointment was at 9am and he was a lot more chatty!

I tried to note everything down and had to ask him to repeat things - I don't know how anyone manages doing it over the phone!!

Here goes;

He mentioned something about a gene mutation meaning that I am at higher risk of clotting, so I will be given clexane. Not sure what result shows this??? I have a slightly raised Anti-cardiolipin IgM anyway (shown up in previous bloods taken at my previous clinic), so I was taking clexane anyway.


He said that CD56 and CD19 + CD5 are both difficult to reduce, so this will be treated with IVIG, as I didn't respond to Itralipids. He said that CD19 + CD 5 was also associated with being an antibody to progesterone, so I will get extra progesterone support (was already getting this with previous treatment - took gestone). No mention of steroids so he obviously feels IVIG is needed - I can question this before we go ahead with the next ICSI cycle.

TH1:TH2 very high. Wants to see it under 25%. He said that I need to take Humira (probably spelt it wrong), which will take 3 months (4 injections).

LAD not high enough. He said B Cell is most important and needs to be 70-80%, therefore will need LIT. He said that I don't need to use a donor, as only one type matching. Quite relieved but not looking forward to LIT. Am on waiting list. He said we should aim to have it mid to end June. We don't need it any earlier than that.

I had to have a TB test due to the high TH1 - sounds strange but apparently TB can be associated with this result, even if it is just dormant. Once we get the result on Monday, if it is negative I will start the Humira. He said that he has been told that superdrug is the cheapest - £750. Not sure if this is for 2 or 4 injections. Can anyone tell me how much it normally costs and where they have bought it from?

My DH asked if the results show a clear reason why it hasn't worked and Dr Gory said yes, several reasons. He said that he can't give any guarantess but our chances will certainly be higher with the above tx.

This all feels very unreal at the moment, I am just going through the motions and doing what I'm told. It's really strange as normally the focus is what type of tx we are going to have in terms of ICSCI, short or long profile etc... Now it's all about getting my body ready to even be in a position to go through tx. Can anyone tell me whether Dr Gorgy tends to go for long or short protocol?

I have done something really silly. He told me to do a clamydia test using menstrual blood when I went for my first appointment. My AF has only just started today, so I was going to try to get a sample in the pot this eve. The pot needs some sterile serum in it, which they gave to me but I forgot the serum was in there, opened the pot upside down so it dripped out onto the floor, aaah!

I'm now going to have to go to a pharmacy to try to get some serum in my lunch break. I hope I can get some?? Not sure what to do if not, as need to do the sample tomorrow. Any suggestions?
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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Thursday, May 19th 2011, 5:13pm

Hi Beanie,

I took humira and got it from healthcare at home for £750 for 2 jabs (1 month supply). They deliver it at home. It needs to be refrigerated. I was lucky and it worked for me so I only had 2 jabs.

You can ask for a sterile pot at the pharmacy. I normally ask the GP though.

Good luck x

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Friday, May 20th 2011, 9:14am

The gene mutation thing, is there anywhere in your results that says that you are MTHFR positive? You can be homozygous or heterozygous positive. That's prob what he's talking about. If yes, I'll explain more!

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Friday, May 20th 2011, 7:29pm

Hi Ruthie

No I can't see that anywhere. I will have to call them and ask if I had that test done and if I can have a copy.

Thanks
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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Friday, May 20th 2011, 8:11pm

It might even have been during Level 1 tests if you had those done elsewhere.

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Saturday, May 21st 2011, 12:28am

Could also possibly be PAI-1 gene mutation? Which is responsible for breaking down clots....? If so did he mention Metformin for this?

xxxx

Me 40 DH 35 TTC 10yr
peritoneal mesothelioma, cystectomy 97 & 00
peritonectomy, lost both tubes & most of left ovary Aug 07


Dec 07 BFP b/ov m/c 9.6wk
July 08 BFN
Dec 08 BFP b/ov m/c 9.6wk

July 09 BFN
Nov 09 BFP 2 x sacs 1 b/o 1 no hrtbt m/c 9.2wk
May10 BFP at 8+4 m/mc @10wk scan ERPC

Found: High NK cells, DQ Alpha match, LAD neg & PAI-1 pos...

NOV 2010 - Immune IVF at CARE Manchester
:BFP: [zx076] :girl: born 25/8/11

OCT 2012 - Immune IVF at CARE Manchester
:BFP: [zx076] :boy: born 24/6/13

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Saturday, May 21st 2011, 3:52pm

Hi Beanie. Hope you managed to get a pot for your menstruation test. The gene mutation thing could be either of the things which Ruthie and Chatterbox have mentioned. Re the MTHFR test, I'm sure that Dr G would have tested this (unless you have previously been tested for it) as he always does and it's one of the 'Chicago tests'. On my results, my MTHFR result was on page 1 and it's very clear so maybe they didn't give you this page..? You will have to see if you are homo or hetero positive as Ruthie says as according to this result you have to take more folic acid. Did Dr G mention to you about taking more folic acid? I'm hetero positve and Dr G just said to double my dose (at the mo I'm taking about 1200ui per day in a variety of diff vitamins) but if you are homo postive then you need to take alot more (about 5mg I think - is that right Ruthie/anyone else?).

Great news that you don't need donor blood for the LIT. Did they tell you the rules about doing the testing on your DH before the LIT? DH needs to go there the day before to have lots of infection testing (this is because of UK law and the timing is because of UK law too). You have to pay extra for this. Then on the timing for the day of LIT, your DH has to have his blood taken from him very early in the morning - there is a strict deadline (otherwise they have to cancel the treatment and you lose your money!). So I think you have to stay over in London for at least 1 night. I hope that all of this goes ok for you and with your IVIG too. xxx

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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Monday, May 23rd 2011, 7:17pm

Thanks Ladies

Regarding the gene mutation he said it was something to do with blood clotting and that I would need to take clexane for it. I will have to ask them. Re LIT I was told about arriving at 8am on the day for DH and then I have to come back in the afternoon but nothing has been mentioned about infection tests the day before for DH. The only reason I know about the timing on the day is because DH asked. I do feel that they don't really explain things enough and rush through everything. Quite frustrating when you are paying out so much money. Do you know how much the infection tests are and how muc the LIT is?
Beanie5
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(ICSI x 4, FET x 6 - 2 early losses)
Tx no. 10 - Immune Protocol through Dr Gorgy :BFP:
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Monday, May 23rd 2011, 7:48pm

My experience, of only 2 clinics to be fair, is that the more you pay, the worse the service from the admin departments!

I think Fluffy's right about the MTHFR. A lot of people are heterozygous (having one copy of the gene) and it usually causes no probs. If you're homozygous you have two copies of the gene, and I think that's when they put you on high dose folic acid. But they would prob recommend clexane too I think, as it can cause blood clots.

The test CB is mentioning is another gene mutation. That's what you've got isn't it CB? I don't know if he would have tested for it, only as CB is the only person I know who has had that test! For some reason most clinics don't do it. ARGC didn't test me for it anyway, and I don't really know why.

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Tuesday, May 24th 2011, 1:06pm

I think its done as part of the level 2 blood tests, but it may not be mentioned much or may appear alongside other clotting factors so isn't usually distinguished from them?? There are about 3 of us I know of on FZ who took/are taking metformin for the PAI-1 mutation. So maybe not that common a test, or maybe its a case of a lot of clinics simply treat with clexane only?

xxx

Me 40 DH 35 TTC 10yr
peritoneal mesothelioma, cystectomy 97 & 00
peritonectomy, lost both tubes & most of left ovary Aug 07


Dec 07 BFP b/ov m/c 9.6wk
July 08 BFN
Dec 08 BFP b/ov m/c 9.6wk

July 09 BFN
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Found: High NK cells, DQ Alpha match, LAD neg & PAI-1 pos...

NOV 2010 - Immune IVF at CARE Manchester
:BFP: [zx076] :girl: born 25/8/11

OCT 2012 - Immune IVF at CARE Manchester
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Wednesday, May 25th 2011, 8:35pm

Hi

It was the MTHFR test. I had a look at our receipt and the price on the website and that was the only one missing. My DH called up and they are going to send the results to us.

Been trying to get hold of Humira. Superdrug said they would order it but then when they double checked they weren't able to and said that we should get it from a hospital. Decided to take it in to our local hospital as the price is the same as through healthcare at home. If we go through healthcare at home we have to post the receipt before they will get it for us, so thought it would be quicker through the hospital.
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Thursday, May 26th 2011, 9:53am

Hi Beanie, I'm glad you have sorted out getting your MTHFR result.

Re the LIT - I know what you mean they really don't tell you all the necessary info do they. You have to keep asking questions to get your answers which is very tiring. Getting info is like getting blood out of a stone from some of these clinics! I've just looked up the costs for you from an email which the receptionist Jessica sent (by the way, she is Spanish and so is also hard to understand on the phone!). The LIT costs £750 per injection and normally you will need 2 injections (so times 2) and the infection screenings cost £270 for your DH.

Hope all that helps. Good luck. xx

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Thursday, May 26th 2011, 7:16pm

Thanks Fluffy

We were thinking of DH getting the screening test done locally and trying to get it on the NHS but not sure of our chances? I know there is the timing issue as well as it is only valid for 30 days for LIT

Got my Gene Mutation result in the post today
FACTOR II - Negative
FACTOR V Leiden - Negative
MTHFR gen mutation - Positive Heteroxygous for the MTHFR C677T Mutation
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Thursday, May 26th 2011, 7:22pm

Ah, well heterozygous is the good one to be. Clexane and aspirin and a good folic acid supplement should sort that out.

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Thursday, May 26th 2011, 9:23pm

Snap! You have the same result for MTHFR as me. As Ruthie says, clexane, aspirin and abit extra folic acid will do the job.

Do abit of investigating about getting the screening done yourselves. I just know that they have to be very strict with the time limit otherwise they cancel it and you lose your money aswell. You could try asking your GP, it doesn't hurt to ask, but I'm not sure that the nhs will pay for these tests (especially if you tell them what the tests are for as your GP probably won't have a clue what you are talking about and it's not something which the nhs supports). Otherwise you could try to find a local private lab which might be cheaper. 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
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Saturday, May 28th 2011, 8:36pm

Thank you for your help

Dr Gorgy just said to take clexane, no mention of extra folic acid or asprin. Maybe when it comes to doing my cycle he will suggest this. I take the Fertility Plus for Women bu Marilyn Glenville, which includes 400 ug of folic acid. I take two of these per day.

Any recommendations on which tablets are best to use? I use to take well women tablets but a nutritionist said that these were better as well as a lot more expensive :) I also have been taking magnesium as I had a hair analysist done which showed that I was low in magnesium and high in copper. Apparently they need to be in balance and stress can use up magnesium. I also take omega 3, which the nutritionist said was good with immune issues. I take omega 7 which has been shown to be good for my immune disease sjogrens. I got really fed up with taking all of these and wonder what I really should be taking. Any advise would be great.
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Saturday, May 28th 2011, 8:58pm

I take the Zita West fertility supplement. She does a pre conception one and then one for each pregnancy tri. She does an omega 3 supplement too which I take. They aren't cheap, but they aren't horrendous, and compared to the cost of tx it's nothing. DH takes her male supplement and omega 3s.

I'm v skeptical about hair analysis tbh. All the studies showed it's v inaccurate. I think as long as you're taking a good quality supplement you should be fine.

I think your dose of folic acid should be fine, it's if you're homozygous for MTHFR they normally give you a really high dose, 5mg I think. I'm sure he'll give you a full list nearer the time, and I wouldn't be surprised if that contained aspirin.

xxx

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Sunday, May 29th 2011, 12:55pm

Morning ladies,

Thanks everyone for the info - this thread is really informative and as we'll be going through the tests soon - I'm sure I'll be back.

Best of luck Beanie and as everyone has said already, now you've got some answers and tailored approach. Fingers and toes crossed for your next transfer.

Scooby2 xxx

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Tuesday, May 31st 2011, 10:29pm

Omg, I am scared!

You are all so brave! What is LIT and IVG and IL, will get much info from level 1 tests? In fairness if we all had these tests done would everyone have issues? Sorry I sound so thick this chatter is all new to me!

So some of you gave to have blood donation? How often does that happen?

X
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Tuesday, May 31st 2011, 11:10pm

I am also worried I had test done but it was because of health problems not my fertility and came back with antibodies ana anf , ena ro la and a couple more I think positive , so the rheumatologist I went to told me there are other woman she sees and they seem to have higher nk cells results if they came back positive on the test above , so I panicked and asked my fertility doctor please test my nk cells etc , his answer was some new study , I got this written on letter from him , so this new study basically shows that nk cells test is irrelevant to the ivf outcome , so he refused this to me , I am now planning to do the testing on my trip overseas ,good idea? I felt he was talking a bit like this as this is my nhs cycle , I don’t know maybe phoebe is right :?:
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This post has been edited 1 times, last edit by "mim" (May 31st 2011, 11:12pm)


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Tuesday, May 31st 2011, 11:20pm

sorry just thought to quote what he has wrote in my letter .
The patient is enquiring about NK cell assays and have advised her , this is not a valid test and there is no evidence base supporting its use in IVF. This has just been reiterated by recent RCOG guidelines .
TTC#1SINCE2003
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Wednesday, June 1st 2011, 8:00am

Hi Mim,

sorry to hear about your diagnosis, that must have been such a shock.

Firstly, it's important to realise that there are 2 separate strands to the immuology debate. What is NOT disputed, by the NHS, private fertility specialists, or anyone else, is that auto immune diseases, like SLE (lupus), RA etc etc, play a part in a woman's fertility and her ability to carry a baby. This isn't in doubt. After a couple of m/c, many women have the so called Level 1 tests. These are offered on the NHS and include a lot of the things you have already had tested. This is because it's proven that there is a link here, and it would be sensible to get your Lupus etc stable before undergoing another IVF cycle. You need to speak to your rheumatologist specifically about this, particularly as some of the treatments used might not be suitalbe for pregnancy and TTC.

However, what is unproven is the idea that patients with no auto immune disease, and no symptoms of such, might still have an over active immune system that affects the reproductive system. That's the category most of the women in here fall into, myself included. The Chicago tests, including the NK cell assay, are looking at certain levels in the body that immune fertility docs believe could be linked to cycle failure. But this isn't proven, and the effectiveness of a lot of the treatments used isn't proven either. That's why no NHS doctor will do Chicago tests, as NICE guidelines won't allow them to.

However, I honestly think that in your case, you need to speak to both your fertility consultant and your rheumatologist again and ask both of them whether they think the outcome of your next cycle could be affected by your auto immune problems. I think it is highly likely that the answer will be yes, and that you'd be well advised to try to get things under control before another cycle of treatment.

Whether or not you then speak to an immune clinic too, like ARGC, or CARE, is another matter, but I suspect that they would both be unwilling to treat you, until a treatment protocol was worked out by your consultants for your lupus etc, and that was well under control. Apart from anything else there may be a lot of different drugs involved and it could get very complicated.

Sorry not to give you happier news. You must be devastated by what has happened to you, on top of losing little Sam last year. Please let me know if you want me to explain anything further.

xxxx

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Thursday, June 2nd 2011, 9:05pm

Hi Ladies

Mim, I have Sjogrens but not Lupus. My Rheumatology specialist told me that there is a cross over between these auto immune diseases. She said that people with Sjogrens don't have difficulties getting pregnant but could have early losses or the babies growth can slow down to much at the end of the pregnancy, so should be closely monitored.

I think that my sjogrens is the reason why I have immune issues that showed up in the tests I had done by Dr Gorgy.

Is your consultant going to do anyting, like give you clexane due to you having Lupus?
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Thursday, June 2nd 2011, 9:35pm

Hi Beanie,

I'm in the process of getting immune test results back from Dr Gorgy, and have really benefitted from your thread. I agree with your comments that given the amount of money we're spending the quality of care, communication and attention at the consultation is pretty poor. So far I have

TNF-a:IL-10 (CD3+CD4+) = 39.4

a little bit raised. My next full cycle (if needed) will be in October time just after yours. What has Dr G told you to do, just call him closer to the time? Are you doing the full TX with him or just the immune meds?

I found an interesting article
that talks about taking Green tea extract, Maritime pine extract and Resveratrol to reduce TNF alpha, has anyone talked about these? Otherwise I've just started taking Omega 3 too.

Anyway, thanks again for starting this thread it's been really helpful to me too
blowkiss
xxx

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Friday, June 3rd 2011, 12:00pm

Hi Guys Thank you Ruthie sooo makes sense but I got a question ,surely if you guys have positives on autoimmune test it will indicate an illness of some sort I mean than it should be for everyone to be treated the same i.e. low dose of steroids etc. in pregnancy , I don’t see the logic that they won’t be threated? please send me some info where i can read I want to know more , I know little about it .
Beanie thank you , my rheumatologist is not that ego to start me on meds right now I don’t know what her reasons are she said if I get any worst I must contact her , I want another doctor , My Ivf doctor thinks I would be able to cope without any extra meds ,well at least i think his is just wanting this nhs ivf to go before September as this when my funding expires if that makes sense. I am quite stressed out ass I get the feeling they are after getting their money and his whole attitude is it is first ivf we should just try normal way see what happens , and if needed we will add meds. I don’t understand but still in discussion with them ,My rheumatologist has never told me anything about the effect on pregnancy has Sjogrens ?( . All she has told me is given me a booklet to read that is it .My aunt has ms and she is very closely monitored etc. , so i thought surely this is just as important , i am better now they had me on anti-inflammatory meds when i started having severe joint pain and shortness of breath , now it comes up on CT scans that my Axillary nodes are enlarged in my left lung mostly and left breast (well i am referred to oncology too to make sure it is not tumour /cancer etc.) I don’t think it is , but because I have history with it they check. I wonder I am flying back home in two weeks should I do the nk cells there and what are the important test I should do regarding fertility , fertility doctor doesn’t want to run them and the fact is he said well can do on nhs this is nhs cycle but I was happy to pay , so i feel I am in for a fail in July ,and possibly nest two ivfs until I pay my ivf and then they will say oh we have to do this and that , Guys advise I need here what test should I have and do you think if i give them to my fertility doctor he will take my nhs ivf away because I gone and done them private . I hope this all makes sense there is just so much going on with me now.
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Friday, June 3rd 2011, 12:24pm

There's a bit of confusion here I think about the tests.

The so called Level 1 tests are tests that are done on the NHS, because the results of the tests are known to be relevant. So, if you test positive for ANA, that could be an indication that you have Lupus, and that would be investigated before any more TTC. It is unlikely that someone would have lupus and not have other symptoms, but it's not impossible, and these tests are for things that are KNOWN to have an effect on fertility and to be linked to m/c.

The Level 2 tests, of which the NK cell assay is one, are different. The relevance of these tests has not been established. The doctors that run them believe that high levels of certain cells or things like increased NK cell killing power are relevant to TTC and can cause implantation failure or miscarriage. BUT that's their belief, it's not been proven in clinical trials.
So you won't find an NHS doctor that will run them, they simply aren't allowed. Whether your NHS clinic would let you do a cycle with them, while having immune tx elsewhere is up to them. Although I am a private patient, I am treated by my old NHS cons, in an NHS hospital, but with immune tx support from another clinic, and my NHS cons is ok with that.

However, my original point still stands, you've been diagnosed with a condition that is KNOWN to cause problems with TTC. It's not necessarily going to cause a problem. My best friend's mum has Lupus and has 2 children with no complications, but it might do, and I honestly think that you need to speak to your rheumatologist regarding whether or not they would recommend any extra tx before TTC.

I'm not saying that the Level 2 tests like NK cell stuff aren't relevant, simply that you are in the position of a problem already being diagnosed, and that needs to be sorted before further tx, in my opinion.

The situation some ladies are in, like myself, is that I have no abnormalities on Level 1 tests, but a lot on Level 2. I have changes on my Level 2 tests that are so severe, they are normally associated with disease like RA. I have no symptoms, so it's not a problem, but it does raise questions about the validity of the tests! The dilemma for people in that situation is that they are healthy, they have no known immune disease, but they do have probs conceiving and some changes on blood tests that may or may not be relevant.

You can get the Chicago tests done in the UK through clinics like CARE, ARGC or Dr Gorgy. I don't see the point in you having them done at home, unless you have a doctor that is willing and able to interpret them for you, and then prescribe any relevant medication. You could show your NHS cons every test under the sun, but they won't take them seriously as they don't believe that the tests are relevant. I also believe that chances are, you will see changes on your Level 2 tests, because your health problems are newly diagnosed, and not fully controlled yet.

I honestly believe that you need to get this sorted first. I know it's frustrating to delay TTC, but your health comes first, and you need to make sure that you are in the best position to carry a baby. My advice would be again to speak to your rheumatologist regarding TTC and to go from there.

BTW, I don't think your NHS funding will be removed if you have private tests, but I do think your NHS doc will do nothing with the results. You need a doctor who does repro immunology to interpret them.

Hope that makes sense.

There's a lot of info in the immune section here, but I don't think a lot of it applies directly to you. You aren't looking for reasons why IVF might not be working, you have a reason with your recent diagnosis, and that needs sorting first.

xxxxxx

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Thursday, June 9th 2011, 10:04pm

Those of you who see Dr Gorgy and have taken Humira. When you took it and got retested, did you have to go back for a follow up appointment or did they just tell you over the phone what the next steps were and post you another prescription if you need another lot of Humira?

Dr Gorgy said that I will need to do 2 lots as my TH1:TH2 is high. I was just wondering what to expect as I feel a bit left in the dark.
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Friday, June 10th 2011, 5:14pm

Hi I've answered in your diary. At the ARGC they retest the cytokines and tell you over the phone, then they fax another prescription to home care. They told me the same but my levels came down with only 2 jabs, so xfingers your will too!

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Thursday, September 15th 2011, 6:54pm

HI

I've had some retests done. I'm a bit confused about the LAD results - is this good or bad? By the looks of it 2 results are now above 30% which is good but the other 2 are below 30% which is bad. They seem to have swapped around. Does this mean that I had a weak positive which is overal negative or is it a positive??

Retest
Leukocyte Antibody Detection Limits
Flowcytometry positive =Negative
(T-cells) IgM+ 6.5%
(T-cells) IgG+ 53.4%
(B-Cells) IgM+ 22.9%
(B-Cells) IgG+ 60.6%

First test

Leukocyte Antibody Detection
Flowcytometry Negative =Negative
(T-cells) IgM+ 41%
(T-cells) IgG+ 20.3%
(B-Cells) IgM+ 43.4%
(B-Cells) IgG+ 10.4%
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Tuesday, September 20th 2011, 8:00pm

Hi Beanie -

Its the IgG ones that are important for this and they have gone up considerably, which is good. However, I thought from reading this site that lots of people results went up to the 90' s though.

Mine went up from Tcells being 8 first time to 16 on the retest, and B cells went down from 19 down to 16. I am a bit depressed cos I was hoping for a miracle and they have not moved much.

Also Dr G has started me on the stimms on friday night just gone, and now I am wondering why the hell I have bothered. He is angling for another LIT asap, but seeing as I am day 5 of stims now, and my DH is away until friday, I don't see much happening in time. I have an appt with him for a scan on Thursday, so I will beat it out of him then. having shot up another £500 worth of stimms drugs in the meantime. I had to ask for my results too after 2 weeks, and they had them in the file all along. he hadn't mentioned it before and I had to bring up the retest results which he replied with, oh they are a little low aren't they? GRRRR.

Oh well, will see what he says on Thursday. Ask Dr G though, give him a call, he will discuss your results with you over the phone.

Big Hugs, kt.xx
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Monday, September 26th 2011, 6:52pm

Hi KT

I can understand your frustrations and worries. The onus really is on us to chase them up regarding our results etc... I got quite down about my TH1:TH2 results, as we have spent a lot of time and money on trying to get the levels down and it just hasn't worked. We are going ahead as it is. I have heard a lot of people going ahead with their tx cycle when they still need to have some more LIT. Sounds like a good idea to have a good chat with him when you have your scan. We went in to see him last weekend and he said that 50/60% for the IgG was ok but wants me to have a booster to try to get it higher, so I am on the waiting list as well.


I think that it is best to discuss it with him before making any big decisions regarding your cycle. Not what you need when you are trying to get into your tx and focus on getting through your tx.

Big hug and lots of luck. Let me know what he says x
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Monday, September 26th 2011, 6:59pm

hi girls blowkiss
My understanding is that you can have intralipids infusion/IVGs during tx and this should help if you haven't taken humira or if that hasn't works. it should also help instead of LIt. The argc for example doesn't so it.
:xxx:

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