Question for those with immunological issues/RLP TICKER WARNING

nawlinsgrl · December 2014

***TICKER WARNING***

Hi Ladies,

I'm an IF grad looking for some answers for an IRL IF friend who is 40 y.o.. She recently had her second 1st Tri miscarriage. Her first was at 9 weeks. At almost 6 weeks this time, she was told she had a molar pregnancy and had a D&C at 7 weeks. The RLP showed that it was chromosomally normal, and it was not a molar pregnancy, but the doctor said it was still not a viable pregnancy.

So, in the interest of exploring other reasons for repeated miscarriages (these were both natural pregnancies, although they have done a few IUIs and were about to do IVF), I was hoping to get some feedback about those with immunology issues, particularly about how it is diagnosed and treated, as well as any other areas to explore as a cause for her repeat losses. She is naturally a bit nervous about trying again, especially with no idea as to what is causing the pregnancies to end so early, and due to her age, time is running out. TIA!

ETA: She also is hypothyroid (recently under control with meds) and her endocrinologist is running a titer to check the effect of her autoimmune system on her thyroid. She had some immunilogical testing done in 2012 (like Lupus) and was negative then.

hmz819 · December 2014

There are only a few reproductive immunologists in the us. The big 3 are braver.man in NY, KW.ak Kim in IL, and Be.er center in CA.

zazu13 · December 2014

***SAIF***

You might get some more responses if you check on PAIF or SAIF, too, but here is my experience:

I technically never tested positive for any immune disorders. I can't remember everything I was tested for but I know for sure thyroid issues, Recurrent Pregnancy loss panel including clotting disorders & NK cells which were simple blood tests and covered by my insurance. Despite no immune disorders found, I was treated with Lovenox during the first Tri and intralipid infusions through week 20. I'll never know if they contributed to me carrying to term or not. The were simple and inexpensive treatments with no negative effects so it was worth it to me. Since she is is already being treated for thyroid issues I would definitely recommend she work with both a reproductive endocronologist and reporoductive immunologist - perhaps one of the ones listed above. I consulted with braver.man via the phone for free, but he only treats in person. I'm not sure about the otehrs. Good luck to her!

Twinkie0612 · December 2014

Immune issues can be tricky to diagnoses since some of the tests are so specialized that only a few labs in the US run them. It really helps to see someone who specializes in immune issues since the results can be difficult to interpret.

Some common auto immune labs that are run are Natural Killer (NK) Cell (both count and cytotoxicity), Aminophospholipid Antibodies (APA), Cytokines, Anti Nuclear Antibodies (ANA), and Anti Thyroid Antibodies.

There are also alloimmune issues as well, which look at whether the mother and father match closely enought that the body tries to fight off the embryo because it looks like a mutated cell of the mother. The test for these are HLA panel (including DQ alpha matching). Not all RIs test for alloimmune.

My RI also tests things like CBC, chem panel, and tests for genetic clotting issues. She also looks at blood flow to the uterus with a doppler u/s.

The treatment really depends on your diagnosis and your doctor. Some use steroids and intralipids to treat NK cell issues, others use IVIG and steroids. For clotting disorders (genetic or APA) baby aspiring and/or lovenox is usually prescribed. For issues with cytokines, some use steroids, IVIG, and some will prescribe TNFa blockers like Humira. For alloimune issues, some would recommend IVIG, nuepogen, or LIT therapy (the prescribed therapy for this really varies by physician).

In my case my immune diagnosis is fairly straight forward. I have high NK cell cytotoxicity (normal count), high cytokines (TNFa), APA positive, factor XIII v34l heterozygous mutated (not a huge issue), and reduced blood flow to my uterus. My treatment is prednisone and IVIG for my NKs and cytokines and baby aspirin and lovenox for my APAs, clotting issue, and reduced blood flow. My RI doesn't prescribe intralipids, Humira, or neupogen.

Another thing to remember about immune issues is that they can turn on and off. My RE did some testing (NK cell and APA) after my first IVF. My NK cell was borderline and my APA was negative. When my RI tested them a year later my NK cell was elevated and APA was positive.

nawlinsgrl · December 2014

Thank you for the responses, I'll pass the info along. Zazu, I did also post on SAIF, but knew there were some IFV'ers that are working through some of these issues and thought it might be a good spot as well. I appreciate the info and I know she does too. Thanks again!

Question for those with immunological issues/RLP TICKER WARNING

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