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BraveGirl

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Wednesday, January 13th 2010, 2:26pm

My immunology appointments

hello all

I just thought I would share my experiences this morning for those also undergoing testing in this area.

This morning I had 14 (Yes, fourteen) vials of blood taken!

They are going to test for:

thyroid function
thyroid antibody
clotting
free androgen index
prolactin
FSH
LH
AMH
cortisol (stress)
chromosome abnormality

Then on day 21 of cycle before IVF they will do the endometrial scratch and I will also have the NK Biopsy. Both these after the next FET transfer which I will have after my lap.

The clinic is doing a study on recurrent implantation failure to try and find a reason for it.

There is so much that could be wrong its a miracle that anyone gets pregant - ever!
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Wednesday, January 13th 2010, 9:25pm

Hi Bravegirl

welcome to the immune section!

Where did you have the tests done? and when do you expect the results?

best of luck

Lou xxx
Need reproductive immunology success stories please 2 help others :)

have u got immune issues?

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Wednesday, January 13th 2010, 11:46pm

hiya bravegirl I would also be interested in knowing where u got the tests done.
Do these include the chicago tests?
Also if the clinic is doing a study are the tests free?
Good luck and plz keep us posted.
x
honeybee

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Thursday, January 14th 2010, 10:25am

I am not sure what the chicago tests are. Can you explain? If you mean NK cells they are going to do it but I could be waiting months and months for the results and they say its not worth stopping treatment to wait. I guess I might be able to get them back sooner if I paid but I don't know. Does anyone else know?

The study is being carried out by Jessops Hosptial in Sheffield. Mr BG also has to give blood for chromsomes and have his sperm re-checked too.

I am not having to pay for these test at the moment I think because I am part of a study.

I am expecting the results in 6 weeks but they told me to do my FET anyway as I am having an endometrial scratch as part of my laporoscopy on 21 January so to get the benefit of it I should doe FET in February.

I also have to complete a questionnaire about stress.
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Thursday, January 14th 2010, 8:22pm

Hiya brave girl thnx for ur reply
Can you plz tell me how u got on to the test in sheffield as I notice u live in wakefield so thats quite a treck for you and cant be your local hospital.
Did your hospital/doctor refer you?
The chicago tests are for immunology as well but more intense and the bloods are sent to the united states as they have the means to carry out the tests.
If they find that you may have an immunology problem will they also treat it for free as part of the study?
I wish you all the luck in the world and plz plz do keep us posted.
thnx
x
honeybee

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Friday, January 15th 2010, 1:49am

Hi Bravegirl! Welcome indeed :cuddle

I am about to have my tests done at the ARGC - but Ive already had all of these tests, which showed all was normal! However, after 5 losses - it would seem I am in need of more specialist testing which are carried out at this clinic and it isnt uncommon to have normal results in the tests you described but abnormal in the Chicago tests (which are far more in depth).

Ive just been having a debate in my diary about having them done. But it's a personal decision and I have 5 losses personally which sort of twisted my arm a bit!

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Friday, January 15th 2010, 1:54am

:hello: again

I thought you might find this interesting

http://www.fertilityzone.co.uk/index.php?page=Thread&threadID=20166

xx

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Friday, January 15th 2010, 11:47am

thanks Bunty I will have a look at that link. I have only had one loss and the study is being carried out by the recurrent miscarriage professor to see whether I think the same things that affect miscarriage also affect failed implantation.

Now it may end up being the case at the end of the study that it is none of these things that affect failed implantation. I guess they wont know until the study is finished and I have no idea when that will be.

With regard to my misacarriage I have been told that as I have only had one my chances of having a successful pregnancy are the same as if I had not had the miscarriage at all. They told me that I am not a recurrent miscarriage patient, rather they want to see what might be causing failed implantation generally and I fit into that category.

Now it may be that I get all clear from these tests and then I am not sure where that leaves me. Down to luck I guess! I mean some girls on here got pBFP on their 5th attempts. I guess if I get all clear I may look at the Chicago tests. Any idea how much they cost and how long they take?

The reason I am being treated in Sheffield is because its easier for me as I work in Sheffield. Plus Wakefield do not have IVF clinic. I went through the choose and book system which is open to everyone on the NHS. Basically, I saw my GP who referred me for my ONE free NHS cycle of IVF. I asked for choose and book and got a letter saying I could use Hull, Sheffield or Leeds. I hate Dr Sharma in Leeds so did not go there, Hull is too far and so Sheffield is perfect.

I then went on the internet and looked up the doctors at the ACU Unit in Sheffield. I read their biographies and so on and did some research into clinic success rates etc. I then chose my doctor and using the choose and book system I rang the central appointment booking line and asked for an appointment with my chosen doctor. I was then on his waiting list the same as everyone else. When a slot came free I met with him and had my free IVF cycle, again the same as everyone else.

The next cycle I paid for as a fee paying patient but with the same clinic because I liked them. My free cycle was not paid for by Sheffield PCT but by Wakefield PCT and I had to fit Wakefield criteria to get that.

Hope this explains and helps you.
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This post has been edited 1 times, last edit by "BraveGirl" (Jan 15th 2010, 11:51am)


BraveGirl

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Friday, January 15th 2010, 11:53am

Bunty I know you are with ARGC but is there no recurrent miscarriage unit at your local gynea department in the NHS hospital. You may well qualify for treatment there.
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Friday, January 15th 2010, 2:09pm

Hi Bravegirl,

I did qualify and warrant further examination from my miscarriage unit - but the tests I am having (which cost about £750) are private and not covered by the NHS, as they are far more advanced and expensive. However, as you so rightly point out - although you have had one tragic loss, your chances are the same as if it never happened. And of course, my situation is entirely different.. so please dont worry you are missing out on something.

I think the sad thing is that a large proportion of ladies who have suffered first tri losses will never know what caused them. But it's great you're having all this testing now, as most places dont test you until you have had 2-3 losses.

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Friday, January 15th 2010, 3:52pm

I think the reason they are testing is that to qualify for the failed implantation study you have to have more than 4 reasonable embryos (we have had 6 very good ones) put back and no implantation.

I am hoping that one day studies like this may give answers to future women in our position. Even I do not benefit now from this research, others in yuears to come might and that is worth something I think.

£750 is a lot, can you tell me what you get for that?
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Friday, January 15th 2010, 7:01pm

hi ladies
Im thinking of having these tests due to 3 failed ivf, can they only be done private,as im thinking of going to CARE,any help or advice would be welcome.



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Friday, January 15th 2010, 7:10pm

Hello and welcome Bravegirl and Kim,
I have had the 'chicago tests' done at CARE Nottingham under Mr George Ndukwe, he is lovely and really cares about his patients. The ARGC in London also does them as does Mr Gorgy at the fertility Academy in London. The chicago tests like Bunty says are in-depth immunological tests that the nhs do not do. The NHS will only treat you with streoids etc where as others might need drugs such as intralipids, humira, ivig etc to help calm down their bodies to help maintain a pregnancy. A good book to get is 'is your body baby friendly' by Dr Alan Beer. I wish i had got this book after my first mc, and by the third i wished i had gone to have the chicago tests but hey inhind-sight is great thing!
Best wishes
melXXX.

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Saturday, January 16th 2010, 12:37pm

Hi guys, I think the ARGC testing covers :-


Natural Killer (NK) Cell Assay (Natural killer cells are members of a type of white blood cell known as "lymphocytes". They perform a number of very important functions including survaillance against cancer cells and infection. However, there is evidence that excess activity in women of reproductive years can be associated with recurrent pregnancy loss)

Th1Th2 Assay (Another group of lymphocytes, known as T cells, can be divided by the functions they carry out. Those that orchestrate immune responses that attack cells that are infected or abnormal are known as "Th1 cells". Other lymphocytes that tend to oppose the responses of Th1 cells are known as "Th2 cells". A natural balance is established by each person and can be formulated in the ratio of Th1 cell numbers to Th2 cell numbers (the "Th1/Th2 ratio"). It is important to establish the Th1/Th2 ratio because women with high ratios can be treated.),

Reproductive Immunophenotype (This test measures the percentage of lymphocyte types in the blood. These include CD-3, CD-4, CD-8, CD-19, CD-5, CD56, CD16)

Antinuclear Antibodies (ANA) (This test checks for problems similar to lupus and rheumatoid arthritis or other similar immunological diseases that can also result in pregnancy losses or infertility. This test becomes weakly positive in women with infertility and in women with recurrent pregnancy losses),

Anti-DNA/Histone Antibodies
A person may develop antibodies against components of the nucleus. The best known component is DNA. But there are other components such nuclear proteins that include "histones". When a person has antibodies to nuclear constituents, it may be a sign that they have autoimmune disorders. These are abnormal responses where the immune system attack one's own body.


T regulatory cells (Treg)
A new group of T cells has recently been defined within the broad category of lymphocytes. These cells are thought to perform a very important role in controlling the natural tendancy of the woman's immune system to reject the semi-foreign fetus. These cells are known as "T regulatory cells" or "Tregs". Higher numbers of Tregs in the blood have been associated with better pregnancy outcome. Measures of Tregs in the endometrial lining have also been shown to be associated with better pregnancy outcome.


Lupus Anticoagulant Antibody, APTT (a blood clotting test), antiovarian antibody test (AOA) and an antithyroid antibodies (ATA)

However Ill let you know more after my appointment on the 3rd Feb : D

Anyone interested in immunology - I would recommened looking at this site http://repro-med.net/repro-med-site2/ind…id=34&Itemid=11

and ordering the book recommended by Mel.



blowkiss

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Sunday, January 17th 2010, 5:50pm

are those tests only for people who have had miscarriages or also for people who have failed implantation?

they do seem a lot more than the NHS ones so I might consider having them too. how many appointments do you have to go to?
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Monday, January 18th 2010, 3:08am

Hi Bravegirl

These tests are also for those with failed implantation which can be a sign of an immune issue. It explains this too in the book by Alan Beer, as I flicked through it tonight. Nottingham Care also cover the tests too (but none of the other 'care clinics do).

As far as I m aware - you only need to go for one appointment for the blood assays descibed above ~ however, if you need or decide to go for immune therapy, there are a number of appointments needed depending of course on your level of problem, which continue when you get pregnant to help sustain a pregnancy.

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Monday, January 18th 2010, 10:10am

thanks Bunty, that is helpful. I will see if any of the current tests come back positive which might supply some answers, if they don't I may well consider the full immunology ones.
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Monday, January 18th 2010, 12:50pm

A lot to think about there hun! I'll be following this closely. :hugs:

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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Monday, January 18th 2010, 3:19pm

to be honest chatterbox I feel sick and tired of the whole thing, you can test to kingdom come but I am not pregnant and have no idea when I will be pregnant. :thumbdown:

I am having my tubes removed (probably) on Thursday which I feel sick and upset about and then more tests. a FET, another cycle. Will it ever end? I feel like giving up but know I can't.

SOrry in a terrible funk today. :faint: :faint:
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Monday, January 18th 2010, 5:19pm

Oh Bravegirl, I am so very sorry - you are definitely living up to your user name. [zx127]

It can be very difficult cant it? As you may well know - I can GET pregnant but cant stay pregnant. Immune problems can cause lack of pregnancy at all, chemical pregnancies and blighted ovums, and miscarriage. I revisited Alan Beer's book and can relate to so many of the case studies. Have you read the book? If not reading it may help you make informed decisions as to whether you would want testing, in the unhappy event you dont get answers.

Do keep going... so many of us feel the same. I know I do. I am only a few weeks after my third second trimester loss, and I am terrified to try again because I just cant take anymore losses. Im hoping these tests will help and some extra immune treatment will help. I have already been on steroids throughout my last pregnancy to no avail, but we dont know why this baby died as the hospital stuffed up the testing. X(

xfingers for all of us. Stay strong.

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Tuesday, January 19th 2010, 10:49am

thanks Bunty, I do feel your story is so much worse than mine and I know there are loads of ladies on here who have been to hell and back, I just feel low because of the operation in a couple of days I think.

I had one early miscarriage and was devastated, I cannot imagine how awful it is for you and want to send you love and hugs and to say that I am incredibly impressed with your bravey too.

I will look at getting that book I think, thanks for the tip xxx
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Wednesday, February 3rd 2010, 4:35pm

Shocked good news - makes a change!

I had yet another hospital appointment this morning to get some of the blood test results and on the whole the news was far better than I was expecting!! :happy:

My AMH test results were 17.4. Now this is the newer test which show the amount of ovarian reserve that you have. A bad result is anything below 5; between 6 and 15 is considered normal range and anything above that is very good. So mine of 17.4 is a great result and should mean that I have lots of eggs left and for my age is brill. It can be a sign of PCOS but I do not have this as would have been seen in my operation. As my consultant said my ovaries are nice and "juicy" and this seems to be borne out by this blood test result. :P

My FSH (follicle stimulating hormone) test was 6.6. Again much better than I was expecting. What they like to see for IVF is anything below 10 for a good response (last time I was tested over a year ago I got 9). So I am happy with this too. :smile:

My LH (luteinising hormone) was within normal range too.

My thyroid antibody and function were both within normal range too.

The only test that was an issue was my clotting (lupus) test. This came back as indeterminate and so I have to repeat it. :cross: If there is a problem here it could be causing the failed IVF cycles so I have asked them (and they have reluctantly agreed) to treat me as though I do have an issue and the treatment is to take a very very low dose aspirin during the IVF cycle. I will take this from day 2 of the cycle and then if I get a positive result, continue throughout a pregnancy. If I do not get pregnant, then we would stop the aspirin and re-do the test. Apparently though it is a low chance that there will be a problem and if there was the treatment would be the same and if pregnant they would introduce clexane too.

I am still waiting for the chromosome test results and am nervous about this but they say of people with fertility issues it is less than 3% xfingers who have a problem in this area and if we do then they will send us to a geneticist to see whether they could get round the problem and would offer counselling on the issues. These results will be back before the next fresh cycle of IVF and the frozen embryos we have are what they are so there is no reason not to go ahead with those.

My NK cell has been sent off but they cannot tell me when I will get it back. Does anyone know how much it costs and where I could get it done privately? ?(

So all in all I am quite pleased, along with the now right side open tube and ovary in the right place I do feel a bit that there is a chance that maybe we will be successful in time, whether IVF or naturally. xfingers I certainly feel that I am doing all I can to give us the best chance and that is better than doing nothing!
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Wednesday, February 3rd 2010, 7:39pm

Hi Bravegirl

woohoo that's fantastic news :thumbsup:

with the Nk test, you can either get a doctor, who you may find in this post Collaborating Doctors??? to take the blood and send it off to be tested. Or you can send it to the lab yourself.

If you send it to the lab yourself, you have to get the correct tubes, take the blood or get someone to take the blood (The nurses at my local Gp's agreed to take mine) and then package it, and send it using Fedex. I do this to a Lab in california and in total it costs me just under £250.

Lou xxx
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have u got immune issues?

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Friday, March 19th 2010, 9:56am

I have now had my anticoagulant back and that was normal so no clotting issues.

On the downside I have neen told that I have raised NK cells mine are 14.6 and they dont like to see higher than 13.9. Am gutted. They are going to give me 10mg of steroids this FET cycle and re-test me next cycle if I dont get a BFP becasue that test was done on day 11 and they prefer to do the test on day 21.

I don't really see that the cells will decrease later in the cycle though. Does anyone know?
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Friday, March 19th 2010, 10:09am

Hi Bravegirl,

Great about the coagulation tests! :thumbsup:

Did you have the uterine biopsy for NK cells, or the blood assay within the Chicago tests? I had the whole raft of Chicago immune tests on the off chance. Im quite glad now, simply because my NK cells were normal but my TNF was not (they are linked). I did try steroids (25mg) but as it didnt work for me... I am now trying intralipids as well as 20mg of Prednisolone, after getting a shock :BFP: last week.

I think the answer to your question is a difficult one to answer... and especially as I dont know if you have any other raised immune levels (in basic terms, they can be quite linked) ~ but also different women react completely differently to the various immune therapies. Some ladies have raised cells before pregnancy and need them bringing down significantly prior to treatment... and some ladies are borderline/ normal but flare WHILST pregnant (it is thought I am the latter). It really depends on the severity and/ or of your specific issue?

I do know Dr Alan Beer (who pioneeredthe Chicago tests) states that he says tx is likely to be far more successful if immune therapy is started prior to tx, rather than starting with a bfp.

Dont feel too down, your results on the face of it aren't super high and based on that.. it would seem easier to treat? Have you thought about having the other immune tests done?

blowkiss

This post has been edited 1 times, last edit by "Bunty" (Mar 19th 2010, 10:11am)


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Friday, March 19th 2010, 10:17am

I see... you are asking if the NK cells will decrease later in your cycle, not owing to tx? My apologies... :cuddle

Quoted

I don't really see that the cells will decrease later in the cycle though. Does anyone know?


The reason why they wish you to test re/ a biopsy on day 21,is because theoretically your lining should be at it's thickest at this time (if you have ovulated ~ and in fact my clinic asked me to MAKE SURE I had by using opks prior to the biopsy)... and for this reason, they are more likely to get a more reliable result and relevant cells from the biopsy itself. I suppose using this thinking, it could be that the number of cells would be unlikely to be reduced. I was told at the Lister, that the NK biopsy by itself can sometimes be misleading and results can vary significantly ~ which is why they like to do a panel of immune bloods tests instead/ along side it to give a much fuller picture. I think it's a personal choice, but it might be worth thinking about if you are worried?

This post has been edited 1 times, last edit by "Bunty" (Mar 19th 2010, 10:18am)


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Friday, March 19th 2010, 11:45am

congratulations on your BFP hon! that is brilliant.

It was the uterine biopsy that they did, not the blood tests.

the other tests I mentioned in my first post were the blood tests. I am not sure which sort they did but they said they have to buy in the testing stuff (although this time they sent it away somewhere).

I guess I could try the steriods on the FET cycle (especially as I have had the endometrial scratch already) and see what happens. As you say the levels are not mega high.

I have just been diagnosed with endometriois and from some of the reading I have done it appears that those with endo are more likely to have the high NK cells, that the two are linked. I had the endo removed in the same laproscopy that they took the biopsy from so who knows, maybe if they had tested again after its removal the NK cells would not be so high.

If it does not work I think I might look at paying a bit more to have the full set of tests done before I pay out £3K for another fresh IVF cycle. I am definately going to get another day 21 biopsy done if this FET with steroids does not work.

how much are the chicago tests?

thanks again x
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Friday, March 19th 2010, 12:01pm

Quoted

I have just been diagnosed with endometriois and from some of the reading I have done it appears that those with endo are more likely to have the high NK cells, that the two are linked.


You are absolutely right, they are indeed. The initial blood tests you had done are the standard Level 1 bloods... but the immune tests are private and are referred to often as the Chicago tests, or the Level 2tests and cost about £780 privately from either Care, ARCG, or Lister. I had them done because I didnt want to spend money on a tx only to find out that it was a waste of money because I had an underlying immune issue. It's a very difficult decision to make because nothing is technically proven yet in terms of study evidence... but there is an awful lot of anecdotal evidence out there.

xx

chatterbox

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Reg: Nov 30th 2007

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Monday, March 29th 2010, 11:41am

Didn't realise that endo and NK activity were linked. hmmm cause for concern, as I've never had a problem with endo before but at the last 2 routine scans the radiographer has commented that it looks like some on my right ovary...
Hope you're holding up ok BG. blowkiss

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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