Immune testing?

babydreams13 · October 2013

So after 2 failed IVFs- 1 BFN and 1 chemical I'm trying to think outside of the box. We are unexplained and have no answers. I am 32.

For those of you who have done immune testing, do you think it was beneficial in your treatment?

If you did immune testing were there any findings?

Were any meds prescribed after your immune testing?

thanks ladies

Viasatalyte · October 2013

I am thinking of doing this too after two failures. Looking forward to the responses. Good luck to u

Lacyj67 · October 2013

Hi there I did my first IVF two years ago and after found some issues with natural killer cells. So I have a high amount and need intralipid infusions to help with that. Ten after two more failed ivfs and one failed FET I just did more blood work and found a blood clotting issue. So I will need to do heparin shots during my next FET. Good luck if your dr will test you I highly recommend it!

Viasatalyte · October 2013

@lacyj67 was the testing performed at your RE's office or a special lab? Glad you were able to identify the issues. Good luck to you.

Lacyj67 · October 2013

My RE has me go to a regluar lab and he send it off to Boston for testing usually. We're in Ca so my blood FET around! Lol my blood has been to Boston but I havnt! Lol

Viasatalyte · October 2013

@lacyj67 sorry for so many questions was the testing and treatment covered under your insurance? If not, was it very expensive? I'm going to ask my RE about it at my wtf appt on 11/4. Not sure if she supports it.

Twinkie0612 · October 2013

My RE tested for NK cells and APA. I have high NK cells and did Intralipid infusion this cycle. It didn't affect IVF #1 because we didn't make it to transfer.

babydreams13 · October 2013

Thanks for all of the responses. So we had a long talk with RE today. He quoted lots of studies and basically said there is no evidence immune testing makes any difference. I pressed him and said well we need to know our issues since we are unexplained and have no idea what is going on. He said this IVF an embryo implanted but he assumes it was not genetically normal and thats why we had a chemical. So we are doing further testing. I had CD 3 BW today to check FSH and other things. I have a script for a ton of BW and will get that done on Monday: lupus anticoagulant, anti-cardiolipin antibodies, anti-beta 2 glycoprotein antibodies, anti-phosphtidyl serine antibodies, activted protein C resistance, factor V Leiden mutation analysis, protein C and S activities, anti-trombin 111 activity, fasting homocysteine level, MTHFR mutation analysis, TSH and prolactin levels (my Prolactin was a little high last time), free T4, anti thyroid peroxidase and anti-thyroglobulin antibodies, fasting glucose and hemoglobin A1C, chromosomal analysis, and AMH. I have no idea what any of that is but I hope an answer lies somewhere.

On Saturday I am having an endometrial biopsy and office hysterscopy.

I am doing this FET with our only 2 frozen embryos. Re says the BB is mid grade and the AC is even lower. He said they are not great but I still have a good chance of it working.

If this doesn't work I am seeing a RE in NYC who specializes in immune issues and has a good reputation. I need someone who thinks outside of the box.

Viasatalyte · October 2013

@babydreams13 thanks for posting the update. So are all the test you're taking immunology? Did you convince your RE to test you?

megs3084 · October 2013

**siggy warning**

@babydreams13 & @viasatalyte this situation sounds a lot like us. After our 2nd ivf failed, I asked about reproductive immunology. I just happen to live within 2 hrs of Dr Kwak Kim in IL. My re said he doesn't believe in it because there are too many conflicting studies. I opted to continue w consulting w her as she was in network an I'm PPO. From march till June we tested me and made/carried out a plan. I'm high nk cells & cytokines, restricted bloodflow to my pelvic organs due to APA(including high pai-1 and homocystine), hypothyroid, low vitamin d, and polycystic tendencies though my lab work was not indicative of pcos.

She put me on metformin, synthroid, metanx, baby aspirin, vitamin e &d, fish oil and calcium right away and gave it time to work. She also encouraged low carb diet and increased exercise. By June she agreed to let us cycle in July. We added lovenox and prednisone once we were stimming. My re also changed me from antagonist to long lupron, I'd lost 40 lbs (about double what my re wanted to reduce my bmi) and did acupuncture. This has been our only bfp and the only cycle we got embies to freeze.

I have no way of knowing what it was that made it work this time. My re did some of the testing @babydreams13 mentioned, but the immunologist lab us more advanced andshe interprets the results differently. I highly advocate for seeing an ri if you can. Also, if you look back in my blog to the march posts, there is a list of all the labs I had done w my workup. I'm mobile or else ud link myself.

As for now, I get monthly ivig infusions, am finally weaning off the prednisone then the metformin. I also take lovenox every other day depending on my blood flow studies. I'd be happy to answer any questions! Good luck and be your own advocate. It pays off!!

babydreams13 · October 2013

Viasatalyte said:

@babydreams13 thanks for posting the update. So are all the test you're taking immunology? Did you convince your RE to test you?

I think they are mostly loss panel and basic tests. My RE and most in my area don't believe in the validity of immune testing. He said if you look hard enough you will find something. He is a total science guy and quoted lots of studies. I think I will do these tests he is sending me for and see if anything comes up. I will also so the endo biopsy with him. The 2 frosties I have are BB and AC so I'm not super hopeful they will work. If not then I'm gong to a RE in NYC and doing every test under the sun and hoping we can do a fresh cycle and have a better response. So much to think about when REs have conflicting reviews.

babydreams13 · October 2013

megs3084 said:

**siggy warning** @babydreams13 & @viasatalyte this situation sounds a lot like us. After our 2nd ivf failed, I asked about reproductive immunology. I just happen to live within 2 hrs of Dr Kwak Kim in IL. My re said he doesn't believe in it because there are too many conflicting studies. I opted to continue w consulting w her as she was in network an I'm PPO. From march till June we tested me and made/carried out a plan. I'm high nk cells & cytokines, restricted bloodflow to my pelvic organs due to APA(including high pai-1 and homocystine), hypothyroid, low vitamin d, and polycystic tendencies though my lab work was not indicative of pcos. She put me on metformin, synthroid, metanx, baby aspirin, vitamin e &d, fish oil and calcium right away and gave it time to work. She also encouraged low carb diet and increased exercise. By June she agreed to let us cycle in July. We added lovenox and prednisone once we were stimming. My re also changed me from antagonist to long lupron, I'd lost 40 lbs (about double what my re wanted to reduce my bmi) and did acupuncture. This has been our only bfp and the only cycle we got embies to freeze. I have no way of knowing what it was that made it work this time. My re did some of the testing @babydreams13 mentioned, but the immunologist lab us more advanced andshe interprets the results differently. I highly advocate for seeing an ri if you can. Also, if you look back in my blog to the march posts, there is a list of all the labs I had done w my workup. I'm mobile or else ud link myself. As for now, I get monthly ivig infusions, am finally weaning off the prednisone then the metformin. I also take lovenox every other day depending on my blood flow studies. I'd be happy to answer any questions! Good luck and be your own advocate. It pays off!!

Thanks so much for the info. This is all so much to figure out. For my IVFs I took fish oil, prenatal, vitamin D, baby aspirin post transfer, and doxycycline and Medrol for a few days after ER, then estrace and crinone post transfer too. I asked RE if I could take baby aspirin before transfer this cycle and he said if I wanted to I could bu he didnt think it would make a difference. What was the prednisone used for? Is Metoformin for PCOS?

Lowering carbs and loosing weight is a good idea. I have gained about 15lbs with all this IF stuff and am at the top of the healthy BMI range but I am going to work hard to loose weight this month before FET.

I have also heard the testing is expensive and insurance doesn't cover it.

How do you think all of your meds would apply to a FET? Do you think you would use the same or some?

Sorry just trying to wrap my head around all of this. I want to do this FET but am skeptical bc of the quality BB and AC. We put 2 BBs in and they didn't work so whats to say these will?

If this doesnt work I'll go to NYC in the summer when I'm off and go to SIRM which does immuniology testing and the clinic is highly recommended. Its hard to wait with IF but I know it would be for the best.

Thanks for your help! Congrats on the pregnancy!!!

megs3084 · October 2013

babydreams13 said:

Thanks so much for the info. This is all so much to figure out. For my IVFs I took fish oil, prenatal, vitamin D, baby aspirin post transfer, and doxycycline and Medrol for a few days after ER, then estrace and crinone post transfer too. I asked RE if I could take baby aspirin before transfer this cycle and he said if I wanted to I could bu he didnt think it would make a difference. What was the prednisone used for? Is Metoformin for PCOS?Lowering carbs and loosing weight is a good idea. I have gained about 15lbs with all this IF stuff and am at the top of the healthy BMI range but I am going to work hard to loose weight this month before FET. I have also heard the testing is expensive and insurance doesn't cover it.

How do you think all of your meds would apply to a FET? Do you think you would use the same or some? Sorry just trying to wrap my head around all of this. I want to do this FET but am skeptical bc of the quality BB and AC. We put 2 BBs in and they didn't work so whats to say these will? If this doesnt work I'll go to NYC in the summer when I'm off and go to SIRM which does immuniology testing and the clinic is highly recommended. Its hard to wait with IF but I know it would be for the best.

Thanks for your help! Congrats on the pregnancy!!!

No problem! I did do PIO and Crinone, plus vivelle patches with the cycle too, but didn't think about it because that was my RE, not the RI. Prednisone is used for my high NK cells and high cytokines. Metformin sometimes is given to people with insulin resistant PCOS (which I am not) but the RI is using it because my PAI-1 level was high, which affects how the blood flows/clots and can impede bloodflow to the ute(which I did have). The RI also recommended against an endometrial biopsy since the inflammation caused by it causes a surge in NK cells/cytokines. For weightloss, my RE had wanted me to lose 20%. As far as the coverage, yes it can be expensive, but my insurance covered it. Dr. KK's office does a really good job of breaking your appt into various charges to utilize your insurance benefits the best. Aside from my 50$ copay for whenever I go, I've paid maybe 30$ OOP to them.

As far as the FET, I would assume the meds would work the same, just scheduled differently. I honestly was afraid of trying again until I knew things were okay. I know a lot of people say that if you look hard enough, you'll find something wrong. But I think part of that is because it's such a new area of study that people haven't given it a chance yet. I can tell you my RE was much more interested in it after we had success. Many REs will offer an RPL pannel, but that's only part of the picture. You really need to look at everything as a whole. That included doppler studies on my pelvic organs. It's really a lot to take on, but it's worth it to have gotten where we are now.

babydreams13 · October 2013

megs3084 Thanks so much for all of the info.

SKLH · February 2014

megs3084 said:

**siggy warning** @babydreams13 & @viasatalyte this situation sounds a lot like us. After our 2nd ivf failed, I asked about reproductive immunology. I just happen to live within 2 hrs of Dr Kwak Kim in IL. My re said he doesn't believe in it because there are too many conflicting studies. I opted to continue w consulting w her as she was in network an I'm PPO. From march till June we tested me and made/carried out a plan. I'm high nk cells & cytokines, restricted bloodflow to my pelvic organs due to APA(including high pai-1 and homocystine), hypothyroid, low vitamin d, and polycystic tendencies though my lab work was not indicative of pcos. She put me on metformin, synthroid, metanx, baby aspirin, vitamin e &d, fish oil and calcium right away and gave it time to work. She also encouraged low carb diet and increased exercise. By June she agreed to let us cycle in July. We added lovenox and prednisone once we were stimming. My re also changed me from antagonist to long lupron, I'd lost 40 lbs (about double what my re wanted to reduce my bmi) and did acupuncture. This has been our only bfp and the only cycle we got embies to freeze. I have no way of knowing what it was that made it work this time. My re did some of the testing @babydreams13 mentioned, but the immunologist lab us more advanced andshe interprets the results differently. I highly advocate for seeing an ri if you can. Also, if you look back in my blog to the march posts, there is a list of all the labs I had done w my workup. I'm mobile or else ud link myself. As for now, I get monthly ivig infusions, am finally weaning off the prednisone then the metformin. I also take lovenox every other day depending on my blood flow studies. I'd be happy to answer any questions! Good luck and be your own advocate. It pays off!!

Hey there. I know this is a old thread but I was hoping I could ask you a question about your treatment! I see you started Predisone early in the stim cycle. My RE is using that protocol too so that I am on steriods for 3-4 weeks prior to transfer! I am wondering the dosage you used during that time. Th ehighest he'll use right now is 5mg predisone (4mg of medrol). I have asked him if he'd consider upping the dosage and he said no. Granted, I don't have much "elevated" to justify the increase I have just seen a lot of Kim Kwaks patients on like 20mg of predisone! Every time I see it I wonder if it was specific for their case or if htat's a average protocol. Would you mind letting me know your dosage? Also I LOVE your story!! brings me HOPE! Congrats to you!!

babydreams13 · February 2014

Ironic this thread was brought back up since I did my immune testing today! I did NK cells and DQ alpha match with DH. I should have the results in 12 days.

babydreams13 · February 2014

HollowBerry said:

I was just looking for this info, I am leaning towards immune testing and will ask my new RE at tomorrows appt if that is something we should look into. Anyone have an estimated cost? (we are OOP)

I did the tests today and they didn't give me an exact price. Their estimate is 400 something for me and 200 something for DH. These tests are not covered by insurance.

I asked my former RE about immune testing but he thought it was a waste of time. My new RE tests for immune issues. Many REs do not believe in immune issues. We are unexplained and willing to look into anything. GL

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