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  • "nicpic" started this thread

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Reg: May 27th 2009

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Thursday, May 6th 2010, 5:54pm

where can i go for testing?

Hi girls

I'm looking for some advice on where to go for immune testing. I'm now going through my 3rd early m/c in the space of a year. My clinic in glasgow dont do any immune testing but did agree to give me clexane and prednisolone on this cycle which has just ended m/c. I really feel that I now want to get the proper testing done to see what is going on.
I live in Glasgow and would be willing to travel but wondered where the nearest/best/most recommened clinics are for getting the tests done. I'll be grateful for any advice you have to offer as this as its all a bit new to me.

Thanks so much
nic xxxxxxxxxxxxxx
NicPic :P


May09 BFP m/c 6wks
Aug09 BFP m/c 5wks
Jan10 BFN
Apr10 BFP mm/c 7wks
Oct10 BFP mm/c 10wks
Feb11 immune issues discovered
Feb11 BFP m/c 5wks
May 11 FET cancelled due to abnormal growth in womb
Jun 11 hysteroscopy

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Children: Lewis - 4 years

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Thursday, May 6th 2010, 6:21pm

Hi Nic,
I'm just back from the clinic to discuss my next treatment. They are going to prescribe me the same medications as you have mentioned above. When my husband questioned the meds they said that the only way to see if I really needed them is to get tested and the nearest place is in Liverpool. Not sure where though. They also said that the tests are very expensive, but in the scheme of IVF probably a drop in the ocean! Glad you are looking to the future. Hope your bearing up.

Mx
Me 34 DH 40.
DS born without any problems- 2006

*1st miscarriage- blighted ovum June 2008
*2nd miscarriage September 2008
*1st ectopic- left tube rucptured Xmas Eve 2008
*2nd ectopic- right tube treated with methotrexate September 2009
*1st IVF- March 2010- chemical pregnancy
*2nd IVF July 2010- BFN
*FET December 2010- BFP. Twins from one egg! Lost twin one at 9 weeks and twin 2 at 10weeks
*Diagnosed with elevated anti thyriod antibodies May 2011
*Surprise natural BFP August 2011- 3rd ectopic. Right tube removed.

kimtia

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Thursday, May 6th 2010, 6:25pm

I've just had immune tests at ARGC in Central London and all my tests totalled £920. I have just got my results and have been found to have high cytokine levels and very slightly high NK cells which could explain my recurrent m/c's and implantation failure.

Hope this helps.

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Thursday, May 6th 2010, 6:40pm

Hi Hun sorry to hear about your losses :(

I had my immune tests at the ARGC in london they cost me £804 - i was told for 13yrs under the liverpool womans i had nothing wrong with me and that my losses where unexplained - I had the nk cell womb biopsy which is what there talking about e.g place for you to go in liverpool as quoted below
When my husband questioned the meds they said that the only way to see if I really needed them is to get tested and the nearest place is in Liverpool.


My nk cell womb biopsy at the liverpool womans come back normal - so i went on and on to lose pregnancys 1 after the other - i managed to fight for prednislione from my nhs doctor at the liverpool womans after asking him for it for a few yrs and he was saying NO - in the end he agreed after my loss in june 2009 and i started them with my pregnancy in dec 2009 which never worked - i had enough and needed to know WHY this was happing all the time and i went and had the tests at the argc and they come back that i DID have nk cells on cd19+cd5 so it just shows you that the nk cell womb biopsy done by the liverpool womans is NOT accurate - as its hit and miss really -

I had my first intralipid infusion which they give for nk cells - its a protein infusion of soya milk and egg yolks and it brings the nk cells down - i had 1 just after my af while ttc and i am taking the steriods still along with asprin and in the 2ww 3dpo at the moment- IF i get my bfp then i will have another intralipid infusion and then 1 every 2 wks till 12wks then 1 every 4wks after that till they say stop - i get my intralipids from healthcare at home £288 per fusion and a nurse comes out and gives you it at home -

I have diary in immunes section which has my results of my immune tests in etc - Hope you get the answers you need hun :)

Tinks

xx

Mavis

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Thursday, May 6th 2010, 6:43pm

Nic, I just wanted to say how terribly sorry I am :-(
M
x

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Thursday, May 6th 2010, 6:46pm

Sorry you're having to go through this NicPic. I hope you get answers soon. I'm looking to have level 2 tests at the argc as my next step...



ruthie

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Thursday, May 6th 2010, 7:25pm

ARGC are lovely and I'm v happy with them but it's a nightmare journey for me and would be even worse for you I guess. CARE Notts have a v good reputation and would be closer for you but I'm guessing still a v long way.
Still I think CARE are happy to do the immune side of things and coordinate tx with other clinics. ARGC will certainly do that so I guess one option would be to have immune testing and tx done through either of those and continue with the IVF side of things at home.

:hugs: :hugs:

chatterbox

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Saturday, May 8th 2010, 10:10pm

Hi nic pic :cuddle so very very sorry to be reading your news :tear:

With regards to Liverpool doing testing this could refer to the NK cells trial they were running which has since closed, as the doctor has moved hospitals. You can also send your bloods off independently and then use the results to visit somewhere like ARGC or Nottingham who will liaise with your own clinic with regards to your tx plan - ETS: as Ruthie has already mentioned.

Alternatively you can do what I did - I got my consultant to agree that he would prescribe Intralipids and steroids for this tx cycle. I didn't have time for the blood test as I had already embarked on the ovarian priming part of my tx. But his opinion was they won't do any harm.

I really hope that you find an answer :hugs:

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

  • "nicpic" started this thread

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Reg: May 27th 2009

Location: Scotland

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Sunday, May 9th 2010, 9:46am

Here's my plan so far....go to GP on friday and ask for Level 1 tests on NHS or ask for referral to a miscarriage clinic (the nearest one i can find is in liverpool!). After this i thought I'd self refer to Care Notts, but now i think i might go with Dr Gorgy instead as CARE said there's an 8 week waiting list. Then i thought i'd go back to GCRM and see Prof Nelson and tell him i'm having the testing done and ask if he would use the information to try anything different. If he says no, then i'll need to see if i can cycle with GCRM but go for immune treatment somewhere else. I havent yet found which immune clinic would do that though.
Do you think that all sounds sensible or am i away down the wrong path?
Thanks so much for all your time helping me with this. I really really really appreciate it.
NicPic :P


May09 BFP m/c 6wks
Aug09 BFP m/c 5wks
Jan10 BFN
Apr10 BFP mm/c 7wks
Oct10 BFP mm/c 10wks
Feb11 immune issues discovered
Feb11 BFP m/c 5wks
May 11 FET cancelled due to abnormal growth in womb
Jun 11 hysteroscopy

Mavis

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Sunday, May 9th 2010, 10:07am

That sounds like a really good plan.
Do you want to go to your GP armed with evidence, or do you think he/she will be fine with doing the tests/referral?

There are medical guidelines that spell out what tests should be done and when (and you qualify) and that support during early pregnancy can reduce the risk of miscarriage.
M
x

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10 years, 5 cycles, and 3 beautiful children.
My family is complete :heart: :heart: :heart:

  • "nicpic" started this thread

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Reg: May 27th 2009

Location: Scotland

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Sunday, May 9th 2010, 10:21am

thanks mavis

my gp is pretty hopeless and so i'm not expecting them to have any idea about any of this. So, i thought i would go in with a list of the level 1 tests that i would like! Is there any where i can get evidence to show that i'm entitled too be referred after 3 m/c and to show what tests should be done?

thanks!
nic xxxx
NicPic :P


May09 BFP m/c 6wks
Aug09 BFP m/c 5wks
Jan10 BFN
Apr10 BFP mm/c 7wks
Oct10 BFP mm/c 10wks
Feb11 immune issues discovered
Feb11 BFP m/c 5wks
May 11 FET cancelled due to abnormal growth in womb
Jun 11 hysteroscopy

Posts: 368

Reg: Apr 9th 2009

Location: United Kingdom London.

Children: No Children, Maybe One day.

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Sunday, May 9th 2010, 1:26pm

Hiya I just wanted to say Hi and I am sorry for your losses.
I just wanted to say not sure if it will help at all. I myself have had 3 miscarriages in 1 year, and I have just got my appt through after asking my doctor to refer mr to a Dr Hassan Shehata, who see`s people who suffer from reacurrent miscarriages, He is at
St Helier Hospital. At Epsom. I only heard about him because my sisiter sent me a paper clipping of him helping a lady who had had 18 miscarriages, and when I read about him It said he has a lot to do with NK testing, I know he also has a private clinic but not sure where it is, I am having a consultation at the hospital with him on june 8th. I think this will be on the NHS. You could google him if any help, :)

BraveGirl

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Sunday, May 9th 2010, 2:55pm

hi there nicpic, so sorry for your losses.

Care Sheffield do immue testing and IVF with immune protocol exaclty the same as Care Nottingham. They might be a bit closer to you too.

Cost of testing £1000 but that DOES include DQ Alpha. It may be that you need intralipds on top of what you have already tried but only once you have had the tests will you know for sure which protocol is right for you.
IVF 1 :BFP: baby5 in heaven 6 weeks
IVF 5 :BFP: Immune protocol Care Sheffield
Oscar Miles arrived 15 April 2011 weighing 6lbs 14oz
My Diary

Mavis

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Sunday, May 9th 2010, 3:05pm

thanks mavis

my gp is pretty hopeless and so i'm not expecting them to have any idea about any of this. So, i thought i would go in with a list of the level 1 tests that i would like! Is there any where i can get evidence to show that i'm entitled too be referred after 3 m/c and to show what tests should be done?

thanks!
nic xxxx


The document I was thinking of is here (**link not endorsed by FZ**):
http://www.rcog.org.uk/womens-health/cli…iage-green-top-
(download the PDF).

Does this cover all the tests you want done though? If you give me a list, I can try and get you all the evidence you need. Good places to look are NICE guidelines, NHS sites, and anything from the royal colleges.

M
x

My Diary
10 years, 5 cycles, and 3 beautiful children.
My family is complete :heart: :heart: :heart:




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