First DE cycle - immune issues?! How would I know?January 12 2012 at 11:21 PM
|green.elephant (Login green.elephant)|
Keeping my fingers crossed for my first DE cycle in March. My donor's baseline this week (w/o meds) was 27 follicles - sounds great to me!
In the meantime, I've been reading a lot of the past postings and many people have mentioned immune issues and all sorts of stuff - are there any other tests I should have done ahead of time to see if I have any of those issues? How would I know? I don't want to wait until after a failed cycle and be back to square one. I've had all the required testing for DE - all was fine - I just have diminished ovarian reserve. I'm just really new to this, especially since I never went through with IVF - if you ladies with some more experience have anything helpful to share please feel free to make suggestions that I could discuss with my doctor.
Sorry for such a short response
|January 13 2012, 12:47 AM |
You don't necessarily know but most women aren't going to run into problems, for what that's worth.
I'm one of the outliers who did (minniet, love that) & I've been on this board since 2005, I think. Most women aren't like me, so take heart in that. I'd be happy to respond to any additional questions you have, although sometimes it takes me some time, but please try not to worry. From a practical standpoint, most women do not rule every immune issue out ahead of time. It's expensive & difficult. Can it be done? Yes. Do most do it? No. Will most REs respond favorably & be able to help? No.
I apologize for the brevity but that's the Cliff Notes version.
I wish you luck in your cycle! So many women do succeed on their 1st DE cycle!
|January 13 2012, 7:29 AM |
As another who DID have immune issues, while I of course wish I'd been tested earlier, the tests are expensive and it's just not feasible to run them on everyone routinely.
Good luck in March. 20+ is a GREAT number!
Agree with both above, but also please remember that immune (m/c/success ment.)
|January 13 2012, 9:20 AM |
issues are just one area of potential problems. That is why some basic testing can be a good idea as failure may not always be down to your age.
Other basic testing areas are:-
Karyotype for DH
Infection for you and DH
Autoimmune including Thyroid and some other clotting issues
So-called level II Immunes (NK Cells, Tnfa, cytokines etc) - much less common cause of failure...
Many of the basics can be covered by an RE/GP, but someone like a Reproductive Immunologist will be able to more effectively interpret results and treat appropriately.
Having some of the above basics though before you spend time, emotions and money on your DE cycle does make sense to me.
I lost 3 oe pgs and 3 DE pgs before being diagnosed and successfully treated with clotting and autoimmune issues.
We are cycle soulmates!
|January 13 2012, 10:37 AM |
Honestly, i just logged in to write the same post! Dr beer's book arrived yesterday and im now more paranoid than ever. Every time i sneeze, im assuming my immune system is overreacting. We just picked our donor last week...bec we're doing shared risk all inclusive, we are chancing an unproven donor. I hope this is not a really bad decision given all the variables that could work against us.
My story looks identical to yours -- bad DOR in my mid 30s, but no other problem signs. Im thinking of doing some of the basic tests that the poster above me (ariadne?) suggested. My recent thyroid results were good, fortunately.
One beers theory that frightened me is that as you enter menopause, your body puts its energy into disease fighting, and moves away from its reproductive role, making carrying any embryo a foreign/unwelcome visitor. Im prob interpreting that wrong, but it makes me wish i had just moved onto de last year and accepted my diagnosis while i still menstruated every so often. Being 39 and on the very edge of technical menopause brings up so many regrets.
Im trying to be positive and move forward; it's hard to envision ever being pregnant...
Do Some Testing IMHO
|January 13 2012, 11:34 AM |
I am an advocate of doing for certain..a complete thrombophilia clotting disorder panel. It is inexpensive and almost any Dr. can run these tests. Also..it will likely be covered in full by your insurance carrier. I would also, if it's not going to be too great a financial burden on you..and even it might...do at least some immune testing. I must say that I thought the testing would be very expensive but in the recent year, Reprosource has started to take most carriers out of network benefits for testing..I think they take BCBS as a main carrier....so if you have BCBS..you may pay next to nothing for this testing. In my case, I had a full Natural Kill cell Assay done for a total of $197 out of pocket...they took my ins carriers out of network benefit to cover the rest. I stopped there and did not do the DQ-Alpha and HLA matching tests which would have cost me around another $400-$500 or so I believe. I did not do further testing because basically..the treatment is the same..at least the immune treatment that I can afford would have been the same, whether or not I had any matches or not. That's the other thing...basic immune treatment is relatively cheap..intralipids, steroids and lovenox. Some people skip the testing all together and just do the treatments for this reason. IMHO..why spend thousands of dollars on DE cycles without having this testing done? You may be one of the women that is not affected..but you may truly have an issue. BTW..if you have endo, any immune disorder, have never had implantation, have had chemicals or late term losses...I would STRONGLY suggest you get this testing done.
Even if your Dr will not prescribe a course of immune treatment nor do any testing, you can go to a Reproductive Immunologist and have this done on the side. You can do this as an out of town patient. Many people go to a Dr. Braverman on Long Island. He used to be with SIRM and now has his own practice. He does not take insurance however and is expensive..but a lot of people like him. Many also go to Kim Kwak in Chicago and Dr. Carolyn Colloum..also in Chicago. Many also go to the Beers Center in California. This clinic is named after Dr. Alan Beers whom pretty much is the pioneer in immune treatments. He is now dead but his book "Is My Body Baby Friendly" pretty much is a must if you have or think you have immune issues. It is a difficult read, but a good starting place. The SIRM clinics also do immune testing but you must be a patient..at least in the NY clinic. Take a look at the BEers website...there is a list of immune testing that should be done..but remember this is different from doing a clotting panel of tests:
Another thing that you MUST do is read and do some research on all of these Dr.'s and immune testing on the Reproductive Immunolgy Yahoo group..you will learn a lot:
Don't be scared, but check it out
|January 13 2012, 11:57 AM |
As someone who also ordered the Beer book years ago and was scared to death, please. do not be scared. The only scary thing is not doing some basic checks.
It is NOT that expensive, especially in relation to a cycle.
We have had so many losses with our own eggs and failure with a fresh donor cycle. Heartbreak and so so much money.
I agree with the previous post, just have a thrombophilia panel done. It's the most important thing to do, and anyway, it's really not that expensive ($600 out of pocket). If you have some positives, then get the opinion of of an RI and take that to your RE.
Don't read the book and stress about it, I spent years worrying about it and thinking I had ruled these things out, but I was wrong. I also agree that it is worth having a $400 SCSA test on sperm, a good uterine evaluation, etc.
If I had been working with Dr. Acacio from the start, I truly believe we would have a child now, and with our own eggs, and have a lot more money in the bank account, all for an extra $1500 in tests...
|January 13 2012, 6:21 PM |
Thank you all for such great information - I feel like I have a better understanding and have some good things to go over with my physician. Much appreciated!
Check out this book
|January 15 2012, 2:43 AM |
Dr Beer wrote a book 'Is my body baby friendly', check it out.
YOu can read about his work on immune problems. Google him. also google Dr Sher's site.
People usually suspect immune issues after three cycles of IVF with no baby (DE or OE).
Good on you for wanting to get everything checked.
Good luck, THK