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Miscarriage/pregnancy loss

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incompatibility with dp- anyone else?

13 replies

barley2 · 13/03/2009 13:43

Hi-
I've posted on here a few times after having two mmc's in the past 6 months. We are lucky enough to be trying for a second child (dd 20 months)but have found out through private tests that I have developed antibodies to my partner and therefore the pregnancies and that I have a high chance of miscarrying again or becoming infertile. Although we sort of knew that this was the problem (same problem with my sister)it is still devastating as NHS doctors/ consultants are still insistant that we do not have a problem. The treatment available is only available privately and is very expensive. Has anyone else experienced this? I'm really confused as the NHS completely denies that this can be a problem but I have read that it could be a problem for a large number of people trying for a second child.

OP posts:
Daynee · 13/03/2009 16:14

Hi barley - I'm sorry to hear of your news but I must admit, I've never heard of this kind of situation. I'll have to run off and do some online research!
Maybe you could try once or twice more and then see about getting this treatment. What is the treatment anyway?

barley2 · 13/03/2009 18:31

Hi Daynee, thanks for your message. As far as I know the research is quite scarce for incompatibilty and some consultants, like Lesley Regan don't test for it. The treatment is immunisation therepy, which involes injecting white blood cells from the father into the mother before and during pregnancy. I also know that this treatment is a bit controversial and not widely tested yet, which is why the NHS don't offer it. In my sister's case she was unable to conceive a second child for 7 years (she was told by the NHS that she had unexplained infertility) but undertook the therepy with IVF and sucessfully had healthy twins. As people aren't aware that it can happen I just wonder if other people with unexplained recurrant miscarriages or infertility might have incompatibilty issues that they are not aware of.

OP posts:
sue10 · 13/03/2009 19:22

Hi Barley,
if you look on fertility friends web site and CARE website you will find lots of people with this problem who have LIT (either injected by Dr armstrong in London or they go to Greece and see a man i think they call Mr Tarassi. It's all to do with an immune test called DQ Alpha, from others reccomendations CARE at Nottingham or ARGC in London is are the best places to go for immune issues as very sadly the NHS do not go indepth in them, they only look at aps/hughes etc.. Sorry i can't help anymore.XXX.

barley2 · 15/03/2009 19:57

Thanks Sue10- we are actually seeing Dr Armstrong as he also treated my sister. Not sure if we can afford the treatment though. Why are the NHS so behind on these issues? It feels really unfare!

OP posts:
sue10 · 16/03/2009 07:04

Hi,
i know what you mean about the cost, having just paid over a grand for the chicago tests level 2 on a credit card!!! if we go ahead with all the treatment for example ivig, humira, lit etc we will need to take out a large loan (if we can get one)!!!!! I dare say in time the nhs will be working alongside all these immune issues but i dont think it will be in my time of life! It's very unfair and makes me sad. Also because we are not rich it makes things that much harder! Anyway sorry for waffling on. Are you with anyone else other thatn Armstrong? George Ndukwe is considered one of the best for immune issues.Ps, did your sister have any other treatments or was it just the LIT?
Best wishes
XXX.

barley2 · 18/03/2009 19:36

Thanks Sue10

What a nighmare with all your costs! We're just with Armstrong at the moment as we knew that our problem was very specific but will consider Ndukwe if it doesn't work out. As far as I know my sister had LIT and IVF as her incompatibility prevented her conceiving a second time. Good luck with all your treatment, I really hope it all works out for you xxxx

OP posts:
4everhopeful · 27/03/2009 11:18

Hi Barley and Sue Just had to post to thank you so much for staring this thread. Ive had 4 unexplained recurrent mmc in 16 months. Have no kids yet & desperate to be a mum. Had all NHS tests done and no cause found, had Natural Killer cells test done privately & still nothing.

Then I saw this thread you started about LIT, I did a bit of research & showed DH, then next night saw TV prog 'The great sperm race' where they talked about leukocytes, thought that rings a bell & saw related to LIT. Then remembered MIL gave a newspaper article about it last July after losing no 3, got it out & saw exactly whats been described & that under Dr Armstrong at Portland. Took this as one too many signs so now made an appt for test on tues!

I'm praying that we finally get an answer, and hopefully a cure!

Just wanted to say thank you so so so much for posting this & setting the ball rolling for us..

I will let you know what happens!

Daynee · 27/03/2009 12:26

Hi ladies: This is great info...well, I should say it's great an
d sucky all at the same time. I was just reading about this test they do called LAD
(Leukocyte Antibody Detection Test) and I assume this is the test you had barley? I think I'm going to call my reproductive endo today and request this test because I don't believe this was one of the 20 tests (ugh) that I took a while back. You can take this test any time, right?
4everhopeful - I'm so sorry for all that you deal with. I do believe that us women with recurrent mc's that have no children are in a bit of a different boat because we just can't seem to have that one!! Maybe this is it for you - let's hope. ANd please keep me posted because I just might be in the same boat. I've had 3 mc's and am working on getting preggers again...

4everhopeful · 27/03/2009 14:17

Thanks Daynee! Sorry to hear what you've been through too I'm having my consultation and LAD test on tues under Dr Armstrong at Gt Portland st, its a fair bit of money but worth every penny for the chance of being a mum finally! I had a ton of tests too but from what Iv read no NHS practices do it, and Armstrong is one of very few private ones.. May be worth checking it out.. Shall keep fingers crossed things work out for you, & will def keep you posted to let you know the outcome!

Daynee · 27/03/2009 14:35

Hi 4everhopeful - Good luck on Tues. I am not familiar with how things work there in the UK (I'm in Ohio, U.S.) but I've been lucky enough here that my insurance has covered most everything. Hopefully this test is also covered...
Thank God it's Friday...red wine and lots of pizza tonight!

sue10 · 29/03/2009 21:43

Hi ladies,
knowledge is power hey!!!! Atleast it gives us some hope doesn't it. I have an appointment tomorrow to see if i need LIT aswell as other results such as nkcells, tnf's etc.. From the research i have done i see that your LAD (leukocyte antibody detection) needs to be positive, if negative you need LIT. If you are a DQ alpha match with your dh then you can have his white blood cells for the LIT, otherwise i think you need donor LIT. Ladies in the UK seem to to go Greece for donor LIT as it is not done here but ARmstrong at Portland Hospital will do staright LIT.
Hope this all makes sense!!! I feel a bit confused myself now lol!!!
Best wishes ladies
XXX.

4everhopeful · 09/04/2009 13:19

Hi all! I dont have the figures but DR Armstrong at Portland called last night to say our LAD tests show 'we would benefit from LIT treatment!' I'm quite overjoyed as no reason ever given for our 4mc! We will now do the bloodscreening test for DH & hoping all is well to go ahead with the LIT treatment! Confused by Sues comment re DQ alpha match? what does that mean?

sue10 · 10/04/2009 17:06

Hello forever hopeful,
if you read the chapter about LIT/LAD in Dr Beer's book "is your body baby friendly " it should help to explain things clearer than i can, hope this helps. Or, go to the fertilty friends website as there is a whole thread on the immune issues forum all about LIT. Goodluck with everything.
XXX.

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