Lovenox/Intralipids/NK Cells/Autoimmune Testing

patchen30 · September 2009

If you've been tested for clotting disorders, ANAs, NK cells, etc., what prompted your RE to do this? Did he/she automatically decide to put you on Lovenox/intralipids, etc.? What tests did they run exactly?

When I first met with my RE I asked him about testing me for ANAs, NK cells, clotting disorders, etc. b/c my mom has Lupus and other autoimmune diseases, and I have Hashimotos which is an autoimmune disease.

He told me that it's not standard protocol to test for those things unless there's been RPL. To appease me though he did test for lupus anticogulant and anti-cardiolipid anitibodies (both negative), b/c he said those could be treated with baby asprin - Lovenox/intralipids were more experimental.

I still wonder about it though b/c of my family history but figured I'd hold off on pushing more until I do at least 1 IUI.

mamabear7 · September 2009

I never really paid much attention to this until I went in for my IVF teach session and worked through all the side effects of the meds with the nurse. I noticed that a lot of them had risks of blood clots so I mentioned to my nurse that my grandmother has a history of blood clots and my mother had blood clots in her lungs (thankfully she was fine). The next day the doctor wanted me in to test my clotting. I'm still waiting for all the results to come back, but the nurse told me if I did carry one of the blood clotting disorders, they probably wouldn't start me on Lovenox until I was pg. She said there are some cases where they would start me earlier, but that they typically don't do that unless the tests came back with certain results.

I also was diagnosed with polymyositis about 3 years ago - its an auto immune disease that is since in remission and has been for 1 1/2 now. I do have an under active thyroid and take synthroid. I would venture to guess that I might have Hashimotos but haven't been diagnosed. My dad has Hashimotos.

How is Hashimotos treated? Is it just the synthroid? Sorry this was so long!

EastCoastGirl* · September 2009

I was tested because my sister had a near-fatal blood clot in her leg when we were teenagers that was the result of taking birth control pills. Later, when she got pregnant, they ran testing and found out that she has a hereditary clotting disorder.

A few months before DH and I decided to officially TTC, I went to my primary care doctor and explained what my sister has and asked that I be screened. As it turns out, I have the same issue (heterogeneous Factor V Leiden) and will need to be on Lovenox / heparin like she was when (if!) I get pregnant.

To do these tests, I only had to give some blood and I also met with a geneticist.

patchen30 · September 2009

mamabear7:

I never really paid much attention to this until I went in for my IVF teach session and worked through all the side effects of the meds with the nurse. I noticed that a lot of them had risks of blood clots so I mentioned to my nurse that my grandmother has a history of blood clots and my mother had blood clots in her lungs (thankfully she was fine). The next day the doctor wanted me in to test my clotting. I'm still waiting for all the results to come back, but the nurse told me if I did carry one of the blood clotting disorders, they probably wouldn't start me on Lovenox until I was pg. She said there are some cases where they would start me earlier, but that they typically don't do that unless the tests came back with certain results.

I also was diagnosed with polymyositis about 3 years ago - its an auto immune disease that is since in remission and has been for 1 1/2 now. I do have an under active thyroid and take synthroid. I would venture to guess that I might have Hashimotos but haven't been diagnosed. My dad has Hashimotos.

How is Hashimotos treated? Is it just the synthroid? Sorry this was so long!

Hashimotos causes about 80% of hypothyroid cases, and the rest are usually a reaction to be treated for hyERthyroidism, pituitary tumors, and other rare causes. So yes, most likely it's Hashimotos. The only way to confirm this is through an anti-thyroid antibodies test. A lot of Drs don't bother with this though b/c if it does come bag elevated (like mine did), there is still nothing they can do for it except treat with Synthroid. There are theories about selenium supps and iodine and a couple other things, but nothing solid.

mamabear7 · September 2009

patchen30:
mamabear7:

I never really paid much attention to this until I went in for my IVF teach session and worked through all the side effects of the meds with the nurse. I noticed that a lot of them had risks of blood clots so I mentioned to my nurse that my grandmother has a history of blood clots and my mother had blood clots in her lungs (thankfully she was fine). The next day the doctor wanted me in to test my clotting. I'm still waiting for all the results to come back, but the nurse told me if I did carry one of the blood clotting disorders, they probably wouldn't start me on Lovenox until I was pg. She said there are some cases where they would start me earlier, but that they typically don't do that unless the tests came back with certain results.

I also was diagnosed with polymyositis about 3 years ago - its an auto immune disease that is since in remission and has been for 1 1/2 now. I do have an under active thyroid and take synthroid. I would venture to guess that I might have Hashimotos but haven't been diagnosed. My dad has Hashimotos.

How is Hashimotos treated? Is it just the synthroid? Sorry this was so long!

Hashimotos causes about 80% of hypothyroid cases, and the rest are usually a reaction to be treated for hyERthyroidism, pituitary tumors, and other rare causes. So yes, most likely it's Hashimotos. The only way to confirm this is through an anti-thyroid antibodies test. A lot of Drs don't bother with this though b/c if it does come bag elevated (like mine did), there is still nothing they can do for it except treat with Synthroid. There are theories about selenium supps and iodine and a couple other things, but nothing solid.

Thanks for the response. I'm self-diagnosing my thyroid problems as Hashimotos!

I was also thinking, have you looked at the side effects of your injectibles? If any of the side effects are blood clots, I would totally demand the b/w for the screening.

patchen30 · September 2009

mamabear7:
patchen30:
mamabear7:

I never really paid much attention to this until I went in for my IVF teach session and worked through all the side effects of the meds with the nurse. I noticed that a lot of them had risks of blood clots so I mentioned to my nurse that my grandmother has a history of blood clots and my mother had blood clots in her lungs (thankfully she was fine). The next day the doctor wanted me in to test my clotting. I'm still waiting for all the results to come back, but the nurse told me if I did carry one of the blood clotting disorders, they probably wouldn't start me on Lovenox until I was pg. She said there are some cases where they would start me earlier, but that they typically don't do that unless the tests came back with certain results.

I also was diagnosed with polymyositis about 3 years ago - its an auto immune disease that is since in remission and has been for 1 1/2 now. I do have an under active thyroid and take synthroid. I would venture to guess that I might have Hashimotos but haven't been diagnosed. My dad has Hashimotos.

How is Hashimotos treated? Is it just the synthroid? Sorry this was so long!

Hashimotos causes about 80% of hypothyroid cases, and the rest are usually a reaction to be treated for hyERthyroidism, pituitary tumors, and other rare causes. So yes, most likely it's Hashimotos. The only way to confirm this is through an anti-thyroid antibodies test. A lot of Drs don't bother with this though b/c if it does come bag elevated (like mine did), there is still nothing they can do for it except treat with Synthroid. There are theories about selenium supps and iodine and a couple other things, but nothing solid.

Thanks for the response. I'm self-diagnosing my thyroid problems as Hashimotos!

I was also thinking, have you looked at the side effects of your injectibles? If any of the side effects are blood clots, I would totally demand the b/w for the screening.

No I haven't, good point though. I have already been tested for lupus anticougulant and anti-cardiolipid antibodies which are both clotting disorders though - are there any others?

I guess I'm a little more concerned about the autoimmune side of it - the ANA and NK cells.

flutterby918 · September 2009

I have been tested for clotting disorders and for auto immune/NK cells.

I believe the clotting test has become pretty standard for my RE. I don't really remember "why" I did it, just that he ordered it and I thought it seemed like a good idea(it was a cheek swab test). Out of 10 "issues", I came back slightly elevated in 4, not bad, but not good, so he figures it won't hurt to treat when (if) I get pregnant. I am on daily baby aspirin and after retrieval I started two heparin injects/day. I didn't make it to transfer on my 1st cycle so I stopped those, so I am not sure if they are something that will continue throughout pregnancy.

As for testing for auto immune/NK cells, he did this with a biopsy. At the time we had been trying for two years with not even a suspected pregnancy and endometriosis. He sees elevated NK cells a lot in endo patients (this is his specialty so he has done a lot of research) and wanted to do this test on me. I have elevated NK cells and will be doing the IV intralipids with my upcoming IVF cycle. I guess the logic behind this is that the NK cells make it difficult, if not impossible, for a potential embryo to implant in the lining of your uterus. Otherwise I have not had any other "regular" autoimmune testing, just on my endometrial cells.

Sorry this is so long, hope it makes sense!!

sescms2004 · September 2009

Yes, I asked to be tested for autoimmune issues after our 3rd c/p. A lot of RE's don't believe in it, but some do. I was tested for APA's, ACA's, all the clotting disorders, and NK cells. I came back positive for one APA and borderline abnormal for NK cells. I was on baby aspirin for one of my c/p cycles, so it did not help.

The doctors at my clinic have done a lot of research on immune issues. As a pp said, they have seen a correlation between endo and and abnormal NK cells. I do have mild endo, as well. They also believe that immune issues can be at play, not only in RPL cases, but in cases of multiple failed IVF's.

When we do IVF this fall, I will be on Lovenox, starting with stims, and Intralipids for the NK cells. My RE didn't think I absolutely needed it, b/c my results were borderline, but after spending all the money for IVF, I am ok with treating empirically. It certainly can't hurt.

PrincessShay80 · September 2009

I asked my RE to test me for the RPL after 1 m/c. I was told Lovenox after pregnancy is confirmed- I went through 3 IUI's and 1 IVF with a BFN. I then switched RE's, my new RE started me on the Lovenox when I started stims. I also asked about the Intralipids (my RE has been having great success with these) he said that it couldnt hurt, due to my thyroid and autoimmune issues I did the Intralipids- I did get pg with my 2nd IVF- but it was a c/p. I feel the difference was the Lovenox and the Intralipids. We are not quite there yet, but we are getting closer and closer- my RE is sticking with my same protocol for my next IVF (maybe just higher dose of stims) but definatley with the Lovenox and Intralipids.

There are a lot of women who need the Lovenox and Intralipds- I would push more with your RE- be your own advocate. I pretty much wanted every test under the sun before moving forward with IVF.

Best of Luck!

patchen30 · September 2009

Do you guys know exactly what they tested you for so I can ask? All I know is NK cells, anti-nuclear antibodies...and is the other one anti-phospholipid antibodies?

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