# Infertility and Overactive Immune System...



## Prayerful

I've always had a really good immune system. So lately, I've been thinking that perhaps my infertility is related an overactive immune system that fights off the sperm and/or prevents any embryos from implanting. Then today I went to the RE for CD4 ultrasound (had a large hemorrhagic cyst on my R ovary) and doc mentioned reproductive immunology as a possible option for further testing. He didn't go into much detail but seemed to think that it is experimental, expensive, and possibly not worth pursuing; but then why would he have even mentioned it all??

I am just wondering if any of you have any knowledge of or experience with reproductive immunology testing. Any information would be much appreciated. Thanks!


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## alicatt

Prayerful said:


> I've always had a really good immune system. So lately, I've been thinking that perhaps my infertility is related an overactive immune system that fights off the sperm and/or prevents any embryos from implanting. Then today I went to the RE for CD4 ultrasound (had a large hemorrhagic cyst on my R ovary) and doc mentioned reproductive immunology as a possible option for further testing. He didn't go into much detail but seemed to think that it is experimental, expensive, and possibly not worth pursuing; but then why would he have even mentioned it all??
> 
> I am just wondering if any of you have any knowledge of or experience with reproductive immunology testing. Any information would be much appreciated. Thanks!

Hey there,

Yes there is such a thing as having an over-active immune system that does cause implantation failure or misscarriage. There are plenty of tests I just went through them, and its just a lot of blood work, and takes about 10 days. I don't know all the tests they did, my fertility specialist just did a immune panel of test, a clotting panel of tests and something called NK cell testing. I got all the results today, and I have elevated NK cells. These cells are thought to be great for keeping your immune system going, but not so great when trying to conceive. They basically attack any foreign cells in your body, and could be attacking your chances of having a baby. 

I am going to see my FS for the full results on Friday (the nurse just called today to tell me) and I will know more then about what exactly causes this, and what we can do to stop it from happening. So you can definitely go see a reproductive immunologist to get more testing done. My fertility Dr does this in addition to normal fertility issues, so I guess I'm lucky with that!

Good luck!


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## mizuno

ali, do keep us posted on what your doc says can be done about your increased NK cell counts. 
I want to ask my doc to do the test, but I'm guessing she won't do it as there is not enough data out there to support its use (I have a background in science so I've looked into this). I'd be interested to know what your doc says about it though. Even though teh data is weak at the moment, it doesn't mean it's not something worth looking into.


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## alicatt

mizuno said:


> ali, do keep us posted on what your doc says can be done about your increased NK cell counts.
> I want to ask my doc to do the test, but I'm guessing she won't do it as there is not enough data out there to support its use (I have a background in science so I've looked into this). I'd be interested to know what your doc says about it though. Even though teh data is weak at the moment, it doesn't mean it's not something worth looking into.

Mizuno - there has been a lot of testing more recently, and my FS seems to have done a lot of research into it. So I think you just have to get yourself the right FS, and if not, you can get an independent consult. The field of study is reproductive immunology. I'll let you know how it goes on Friday!


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## Prayerful

Ali and Mizuno, thank you for your insights into this. I look forward to hearing how your appt went today Ali. I have scheduled an appt with my RE on Jan 25 to discuss other testing as well, including reproductive immunology. 

Mizuno, have you decided if you are going to ask your doctor about it?

Good luck to both of you!


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## alicatt

Here is how my FS appt went:

1) Why are my NK cells elevated?

They are elevated because they are. There is no answer, at this point in my life they are elevated, but that doesn't mean that they will be for life. He used the democratic party and the republican party and their defense budgets as an analogy. Right now my immune system is high like it would be under a republican administration, but in a few more years it could be low as in a democratic party administration. Having an elevated NK cell count is normally a good thing as it fights the common cold, and flu and cancer. However for some women it also means it will kill your embryo.

2) What is your recommended plan?

We went back and forth on this. The test they did to determine if my NK cells were elevated included suppressing them with IVIg and Intralipids (the 2 options for suppressing NK cells) to see if my body would respond appropriately. My body did, and with the IVIg they dropped from 12 down to 8, and with Intralipids they went from 12 down to 9. Both would be satisfactory as we want the number to be under 10. The recommendation is to do an infusion before transfer, and if you end up pregnant do 3 more infusions (1 per month). The IVIg infusion costs $3000 per infusion and the Intralipids cost $1000 per infusion, not covered by insurance (of course). So my FS's recommendation (and actually my initial thought as well) was to do the first infusion with IVIg, and if I get pregnant to follow up with the Intralipids for the last 3 infusions. 

3) Should we do further testing to ensure I don't have any uterine/entometrial issues?

He brought up a test that is brand new to the US, in fact he said I could very well be the first person to do it in the US. This is something that has been widely done in Europe and they have had great success with it. They are branching out to the US, and are setting up a lab in Miami, FL. My FS is going to be one of the Dr's that are working with them and continuing the testing in the US. I asked about what the procedures are and he said that we would do a trial cycle. So we'd just monitor everything and create the exact same environment for the transfer, but not actually do the transfer. During the cycle there would be 2 endometrial biopsies, timed around the implantation window. This would do 2 things. First it would determine the length of my implantation window (normal is 4-5 days), and second it would determine if there were any abnormalities that we would have to deal with. I asked him about cost as this sounded expensive. He said he would run all of the testing through my insurance, and they would cover it, except for the testing of the biopsies. He said that he would work with me and the company that is doing this testing to come up with a discounted rate since this is a new type of test in the US market. So I would have to pay a few co-pays, and the medications necessary for a FET, along with the discounted rate for the testing of the biopsies.

OK, so now you need to take a deep breath. BREATHE.

So the full plan is this:

1) Call when I get my next period. 
2) Go in and have base ultrasound on day 3-4 of my cycle
3) Be monitored via ultrasound and blood work to detail my cycle, and when the time comes do the biopsies (this is an in office procedure) not a big deal.
4) Get the results from the biopsy, and use the results to ensure we don't have endometrial issues and to pinpoint the best day of my cycle for implantation
5) Wait for my next period to arrive
6) Base ultrasound on day 3-4 of my cycle
7) Monitored via ultrasound and blood work until transfer day
8) Transfer
9) Wait to see if it takes


The NK testing was done in Illinois at: https://www.fclab.us/

The Endometrium biopsy testing is done here: https://www.ivi.es/en/ (however they are opening a lab in Miami)

PM me if you have more questions!


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## Prayerful

Wow! That was great information. Thank you so much for sharing. Now I can't wait for next Friday to get here so I get the lab work done, get the results back and work out a plan with my RE. It is sad but I am almost hoping this is our issue because at least then we would know what to do to fix it.

Please continue to keep us updated on your journey. I can't wait to hear about your BFP!!


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## Springflower

I'm an immune testing success story. 3 failed icsi's. Then I saw an immune dr, who tested me. My results were awful, but he sorted me out. Took about 6 months but finally I was ready to try again. Next cycle pregnant with twins. There is no doubt in my mind that my immune system was to blame.

xxx


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## alison29

Check out The pursuit of Pregnancy blog the woman there has all types of immune issues and just got her BFP she lists all the meds and protocols plus this great dr she worked with.


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## alison29

let me add sticky bfp she is at 10 wks..she had many chm pregs before


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## Prayerful

Springflower said:


> I'm an immune testing success story. 3 failed icsi's. Then I saw an immune dr, who tested me. My results were awful, but he sorted me out. Took about 6 months but finally I was ready to try again. Next cycle pregnant with twins. There is no doubt in my mind that my immune system was to blame.
> 
> xxx

That is so good to hear! And congratulations!! Why did it take 6 months to get "sorted out" though? What kinds of treatments did you do?


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## alicatt

Prayerful said:


> Springflower said:
> 
> 
> I'm an immune testing success story. 3 failed icsi's. Then I saw an immune dr, who tested me. My results were awful, but he sorted me out. Took about 6 months but finally I was ready to try again. Next cycle pregnant with twins. There is no doubt in my mind that my immune system was to blame.
> 
> xxx
> 
> That is so good to hear! And congratulations!! Why did it take 6 months to get "sorted out" though? What kinds of treatments did you do?Click to expand...

Yes! Inquiring minds want to know :thumbup:


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## mizuno

thanks a lot ali for that update. 
I'm glad to see that your doc is at the cutting edge or research. I hope these treatments really do help.
however, my doc is not so progessive and there is no way in hell she'll go for this testing and treatment. But, I will ask her anyway (appointment tomorrow).


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## alicatt

mizuno said:


> thanks a lot ali for that update.
> I'm glad to see that your doc is at the cutting edge or research. I hope these treatments really do help.
> however, my doc is not so progessive and there is no way in hell she'll go for this testing and treatment. But, I will ask her anyway (appointment tomorrow).

Do you have the option for a second opinion?


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## mizuno

alicatt said:


> mizuno said:
> 
> 
> thanks a lot ali for that update.
> I'm glad to see that your doc is at the cutting edge or research. I hope these treatments really do help.
> however, my doc is not so progessive and there is no way in hell she'll go for this testing and treatment. But, I will ask her anyway (appointment tomorrow).
> 
> Do you have the option for a second opinion?Click to expand...


I guess I could get a referral to another place. It takes months to get it though and then I'd be starting from scratch. Plus, my family doc is not so keen to give me a referral as I'm already going to see an endo for my thyroid issues. It's nice that in Canada these things are paid for, but it all takes sooo long... I wish I could just pay and see a doc. 
Anyway, I'll let you know how tomorrow goes.


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## alicatt

mizuno said:


> alicatt said:
> 
> 
> 
> 
> 
> mizuno said:
> 
> 
> thanks a lot ali for that update.
> I'm glad to see that your doc is at the cutting edge or research. I hope these treatments really do help.
> however, my doc is not so progessive and there is no way in hell she'll go for this testing and treatment. But, I will ask her anyway (appointment tomorrow).
> 
> Do you have the option for a second opinion?Click to expand...
> 
> 
> I guess I could get a referral to another place. It takes months to get it though and then I'd be starting from scratch. Plus, my family doc is not so keen to give me a referral as I'm already going to see an endo for my thyroid issues. It's nice that in Canada these things are paid for, but it all takes sooo long... I wish I could just pay and see a doc.
> Anyway, I'll let you know how tomorrow goes.Click to expand...

Mizuno - I was just reading about how your thyroid can cause your NK cells to be out of wack. I too have thyroid issues. So you might want to bring that to your FS/RE's attention. That your immune system gets upset when other things are off kilter. So regulating your thyroid is a good thing, but you probably will need further help to get the embryo to stick. :shrug: Figured I'd let you know so you could discuss it with your FS! Good luck!


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## mizuno

thanks, ali. That's a good point to bring up. 
I figure if my FS won't listen to reason tomorrow, I'll try to bring it up with my endo next month and see if he'll do immune testing.


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## alicatt

mizuno said:


> thanks, ali. That's a good point to bring up.
> I figure if my FS won't listen to reason tomorrow, I'll try to bring it up with my endo next month and see if he'll do immune testing.

Good idea! Hopefully someone will listen :)


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## Prayerful

Well, I met with my RE yesterday. He advised not to do the full immune testing yet because it is still experimental and can cost around $5000, which insurance typically does not pay. Instead he wants me to do limited testing with just the Natural Killer Cell Activation with IVIg/Intralipid Suppression test. Through ReproSource testing center, it costs $689 if billed to insurance which they may not pay any of or I can opt not to send the bill to my insurance and pay just $255 out of pocket up front. We are also doing some more testing on DH. He will have the sperm binding test and DNA fragmentation test done. I'll update with more information when we get the test results back.

Mizuno - How did it go with your FS?

Ali - How are you doing?

Springflower - We'd love to hear from you if you're still around!


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## Springflower

Sorry I posted then didn't check back in.

I had a variety of issues which I needed to sort out before I could cycle again. Some were immune related others weren't. But it was my immune dr who discovered the problems. My thyriod was under active so I had to bring that down to under 2. Took forever, and I tested positive for a vaginal infection whcih again took a long time to sort as the abs kept making me sick.

I had very stubborn NK cells and TNFas. I had to try a variety of treatments to get them down. I was on IVIGs, Intralipds, humira, pred, clexane etc and all that plus the retests took time. Which is way it ended up taking 6 months to sort me out. But having spent so much I didnt want to try again until I thought I stood a decent chance. Hope that helps.

Also I saw my dr this August with a view to trying again, he advised me to try asap as my body would be in a better state to support a pregnancy. So if you do try immune thearpy and do get pregnant it worth remembering if you want to try again. 

Good luck girls! My best advice would be to find a dr who wants to help you and supports immune treatment if thats the route you want to go down. I bought Dr Beer's book. Is your body baby friendly? Its not an easy read but I found it very useful. I'm in the UK but I know Dr Braverman in the US is very well thought of.

xxx


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## alicatt

Prayerful - thanks for asking about me.


I'm still waiting for AF to arrive. Then I have my trial cycle where we will be doing a test to see if my endometrium is satisfactory. I'm going to ask my FS about additional medications that will help to provide a better chance at my embryo implanting as well.

My numbers were still pretty high even with the IVIg, so I'm worried that it on its own will not be enough. 

I'll let you know when I have more answers!


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## Prayerful

Just wanted to give an update... I had some limited immunology testing done and got my results back today. My NK levels are high so my suspicions were correct about my overactive immune system. The lab also ran a test to determine which treatment would work best for me. Apparently my samples responded best to the intralipid therapy. So, this cycle I will be switching back to Femara (from Clomid) but continue taking Follistim and Ovidrel. I will now also be adding in Prednisone and a 3-hour intralipid infusion. I finally have hope again that we really will get our miracle baby someday (soon)!


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## alicatt

Prayerful said:


> Just wanted to give an update... I had some limited immunology testing done and got my results back today. My NK levels are high so my suspicions were correct about my overactive immune system. The lab also ran a test to determine which treatment would work best for me. Apparently my samples responded best to the intralipid therapy. So, this cycle I will be switching back to Femara (from Clomid) but continue taking Follistim and Ovidrel. I will now also be adding in Prednisone and a 3-hour intralipid infusion. I finally have hope again that we really will get our miracle baby someday (soon)!

Prayer - sounds like you have the right combination now. I'm glad you got your NK cells tested! I had a similar test done and mine came back with better suppression with IVIg :wacko: I was hoping for the intralipids as they are cheaper and I don't think they effect you as badly as the IVIg does during the 3-4 hour infusion. When are you going to try again? I'm hoping to do my transfer in about 5 weeks!


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## Prayerful

I know, I was excited I responded better to the intralipids. I am a big cheapskate and apparently my body is too! :haha: I'm trying to do a cycle this month. I am supposed to do the infusion next Thursday but I still have to get the meds and find an infusion center. I've hit road blocks in both areas already though. I used to work in a clinic that does occasional infusions and I'm trying to contact my old supervisor to see if she can get me in but she is out of the office until Monday. Then a few hours ago the pharmacy called and told me they are out of the intralipids and won't get any more until March 30, which is way too late for this cycle. I'm praying that I'll be able to find another pharmacy to get the meds from and that they can be shipped in time!

Have you done an IVIg infusion yet? Or will the one in 5 weeks be the first? It sounds like you are doing IVf, right? Will that be your first IVF cycle? We decided to stick with IUIs for a few cycles hoping that the intralipids will make all the difference.

How did your endometrium test go?


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## alicatt

Prayerful said:


> I know, I was excited I responded better to the intralipids. I am a big cheapskate and apparently my body is too! :haha: I'm trying to do a cycle this month. I am supposed to do the infusion next Thursday but I still have to get the meds and find an infusion center. I've hit road blocks in both areas already though. I used to work in a clinic that does occasional infusions and I'm trying to contact my old supervisor to see if she can get me in but she is out of the office until Monday. Then a few hours ago the pharmacy called and told me they are out of the intralipids and won't get any more until March 30, which is way too late for this cycle. I'm praying that I'll be able to find another pharmacy to get the meds from and that they can be shipped in time!
> 
> Have you done an IVIg infusion yet? Or will the one in 5 weeks be the first? It sounds like you are doing IVf, right? Will that be your first IVF cycle? We decided to stick with IUIs for a few cycles hoping that the intralipids will make all the difference.
> 
> How did your endometrium test go?

Love your comment about your body being cheap! LOL! I wish mine were, UGH. Nope.. mine responded better to the IVIg. Oh well, I'm just glad I know now before I transfer any more of my precious embryos!

I'm not exactly sure what the next steps are? I think the biopsies will be late next week, maybe Thursday and Saturday?

Then we wait 2 weeks for the results and then I'll do my infusion and probably a week after that we'll do the transfer? I would assume the transfer will be 4 weeks from my biopsy? 

I'll know more after my appt on Monday.

No more IVFs for me! I have 4 frozen embryos and that is all, if we can't make a baby with them, then it's game over.


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## Prayerful

It looks like Thursday will be a big day for both of us then! I hope everything goes smoothly with the biopsies. I will definitely be thinking of you. 

I just feel so good about this cycle. It was devastating to learn that I am the likely cause of our infertility but at the same time it is a huge relief to know that we should be able to overcome this problem. With the IVIg and your 4 embryos, I'm sure your chances are even greater too! Praying for both of us!


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## alicatt

Prayerful said:


> It looks like Thursday will be a big day for both of us then! I hope everything goes smoothly with the biopsies. I will definitely be thinking of you.
> 
> I just feel so good about this cycle. It was devastating to learn that I am the likely cause of our infertility but at the same time it is a huge relief to know that we should be able to overcome this problem. With the IVIg and your 4 embryos, I'm sure your chances are even greater too! Praying for both of us!

Thanks! Unfortunately my lining decided to crap out :( so I am on provera to bring on AF and we'll try again next cycle. We'll be using the Vivelle Dot patch this time to administer the estrogen. Hopefully that will work better!

GL on Thursday!


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## Prayerful

Thanks Ali! I managed, with DHs help, to get everything arranged for tomorrow. US tomorrow at 8:15am then, if that goes well, the infusion will be tomorrow at 10am! I'm so excited!

Sorry to hear about your lining. How thick did it measure at? Mine was only 5.3 last cycle. I hope next cycle goes better for you!


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## Prayerful

Well, I was hoping to have better news but wanted to give an update. Everything went well with the infusion. In all it took about 5 hours at the infusion center. About 30 min of paperwork and formalities and 3.5 hours for the infusion itself. Then they made me stay for an hour after the infusion ended to observe for any adverse reactions. There were none! Within a few days though I knew the Intralipids were working because I developed my first cold in a very long time! Also, (TMI) the odor I always developed after sex, which I thought was normal, disappeared! I was so sure this would be our month but unfortunately today is CD1 again for me. I think there were timing issues with the trigger and IUI this time, so I'm still hopeful that this is the right treatment for me. I go for baseline U/S tomorrow. Hoping there are no cysts so I can keep trying!


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