Having to fight to get tested for NK cells

Having to fight to get tested for NK cells

futurebeauty
futurebeauty

June 8th, 2012, 9:30 pm #1

I have been told over and over that it is unnecessary by 3 docs: my OB, my maternal specialist and now my RE. They all believe that having 6 miscarriages in normal for AMA even DE m/c. So I just had to make a phone consult w/ SIRM that will cost me $200 and who knows how much the test will cost. I am tired of having to fight just to get a baseline test let alone a possible treatment.

Anyone else have to work so hard just to be tested??

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Joined: September 26th, 2008, 9:06 pm

June 9th, 2012, 6:21 am #2

I got a nice surprise at the end, though, when my insurance, which had never paid anything IF related, paid the immune testing in full. Hope you get the help Ithink you need.

One other idea,might your RE be willing to treat you without testing just due to your history?
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Joined: August 17th, 2005, 11:44 pm

June 9th, 2012, 3:13 pm #3

I have been told over and over that it is unnecessary by 3 docs: my OB, my maternal specialist and now my RE. They all believe that having 6 miscarriages in normal for AMA even DE m/c. So I just had to make a phone consult w/ SIRM that will cost me $200 and who knows how much the test will cost. I am tired of having to fight just to get a baseline test let alone a possible treatment.

Anyone else have to work so hard just to be tested??

FB
lab can actually order the tests for you. SIRM used to always do free consults, I didn't realize that had changed. http://www.millenova.com/tests/nkassay.cfm
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Ariadne
Ariadne

June 9th, 2012, 3:39 pm #4

I have been told over and over that it is unnecessary by 3 docs: my OB, my maternal specialist and now my RE. They all believe that having 6 miscarriages in normal for AMA even DE m/c. So I just had to make a phone consult w/ SIRM that will cost me $200 and who knows how much the test will cost. I am tired of having to fight just to get a baseline test let alone a possible treatment.

Anyone else have to work so hard just to be tested??

FB
Your experience is pretty typical. Most REs & clinics still aren't believers in testing & treatment, even for women with a history that suggests it might be prudent.

Most women have to seek out immune issue friendly clinics or go to a reproductive immunologist. I did both, first switching from a mainstream clinic that refused to help me search for more answers to an RE who tested & treated immune issues. I then switched to an RI to test & treat immune issues, which finally did the trick.

It's not an easy path, so your experience is not out of the ordinary at all. It's for the best, though, that you find someone to consult with who knows the area. Sometimes helpful doctors who aren't versed in the issues will agree to order the testing, but then when it comes to interpretation & treatment, either they can't help or what they can offer isn't enough.

My very 1st NK assay was run by my ob/gyn's office, as the kind NP was willing to help. But then the office couldn't interpret the results & neither could I. I then had to find an RE, which I did, & it turns out the test that was run wasn't one he could do anything with (it was not an NK assay geared for reproductive immunology). So I was back at square one.

Anyway, that's a longwinded way of saying that yes, it's pretty normal, but it's usually for the best that you seek out a specialist. If not, there are even more pitfalls & this is not an easy thing to explore under the best of circumstances.

Good luck!!

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futurebeauty
futurebeauty

June 9th, 2012, 4:49 pm #5

I got a nice surprise at the end, though, when my insurance, which had never paid anything IF related, paid the immune testing in full. Hope you get the help Ithink you need.

One other idea,might your RE be willing to treat you without testing just due to your history?
treatment even though I tested negative to all clotting disorders. I really need to know my NK cell levels just to help me understand my body. I am going to ask the SIRM RE next wk how often I should be tested during my pregnancy or if it is needed at all.

I wonder if I am the type whose NK cells just go haywire when pregnant but otherwise have normal levels.

I will definitely have the clinic run my insurance just in case.

Thanks so much,
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futurebeauty
futurebeauty

June 9th, 2012, 4:51 pm #6

lab can actually order the tests for you. SIRM used to always do free consults, I didn't realize that had changed. http://www.millenova.com/tests/nkassay.cfm
I will have the clinic run my insurance just in case it will pay for the consult but I am not holding my breath. I will also try to get the bloodwork covered under my insurance as well.

Thanks for the lab clinic info.

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futurebeauty
futurebeauty

June 9th, 2012, 4:58 pm #7

Your experience is pretty typical. Most REs & clinics still aren't believers in testing & treatment, even for women with a history that suggests it might be prudent.

Most women have to seek out immune issue friendly clinics or go to a reproductive immunologist. I did both, first switching from a mainstream clinic that refused to help me search for more answers to an RE who tested & treated immune issues. I then switched to an RI to test & treat immune issues, which finally did the trick.

It's not an easy path, so your experience is not out of the ordinary at all. It's for the best, though, that you find someone to consult with who knows the area. Sometimes helpful doctors who aren't versed in the issues will agree to order the testing, but then when it comes to interpretation & treatment, either they can't help or what they can offer isn't enough.

My very 1st NK assay was run by my ob/gyn's office, as the kind NP was willing to help. But then the office couldn't interpret the results & neither could I. I then had to find an RE, which I did, & it turns out the test that was run wasn't one he could do anything with (it was not an NK assay geared for reproductive immunology). So I was back at square one.

Anyway, that's a longwinded way of saying that yes, it's pretty normal, but it's usually for the best that you seek out a specialist. If not, there are even more pitfalls & this is not an easy thing to explore under the best of circumstances.

Good luck!!
It is nice to know that my story is not so unique but it is so sad that more docs will not help us and the we have to keep fighting just for the right to be treated correctly.

I am glad that I am finally consulting w/ an RE that believes in NK cell testing and treatment.

Thanks for your post.

FB

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Joined: June 2nd, 2007, 7:45 am

June 11th, 2012, 9:23 am #8

I have been told over and over that it is unnecessary by 3 docs: my OB, my maternal specialist and now my RE. They all believe that having 6 miscarriages in normal for AMA even DE m/c. So I just had to make a phone consult w/ SIRM that will cost me $200 and who knows how much the test will cost. I am tired of having to fight just to get a baseline test let alone a possible treatment.

Anyone else have to work so hard just to be tested??

FB
just checking you know that there can be high NK cells in the blood but low in the uterus and vice versa, and either one can cause major problems. You will need a uterine biopsy as well as a blood test to assay for reproduction.
I had normal circulating NKs but sky high uterine ones...and my regular gynecologist did the uterine biopsy...
HTH.
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Joined: December 23rd, 2010, 2:11 am

June 11th, 2012, 11:03 am #9

I will have the clinic run my insurance just in case it will pay for the consult but I am not holding my breath. I will also try to get the bloodwork covered under my insurance as well.

Thanks for the lab clinic info.

FB
Many women who use Sher do not know this..Millenova labs is owned by Dr. Sher..(SIRM)..he makes money by sending the blood to them..It is a small lab in Chicago. Also, results are qualitative and do not give numbers, which is something that bothered us. In NYC, there is a law that forbids a doctor to send blood to a lab that he owns. We saw Sher is NYC and the blood was sent to a lab in California, where we were given quantitative results. That helped us make the decision about using or not using additional treatment.
Also, please read the lower post from Lauranz..she is correct about the uterine biopsy. My blood was borderline but biospy was completely normal.
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Ariadne
Ariadne

June 11th, 2012, 2:22 pm #10

I have no idea what SIRM's position on the biopsy is as I wasn't a patient there, but I had the opposite issue - 2 normal uterine NK biopsies over several years but sky high NKs at times, particularly with implantation & during my 1st pg. (But not my 2nd pg.)

It may be worth getting a couple of opinions, futurebeauty. It's a pain but navigating the information on this subject & trying to make the best decision for yourself is usually not easy. Unfortunately. Doctors even within the field vary somewhat on testing & treatment, so you have to educate yourself in order to know what questions to ask & how to evaluate what you're being told.

If you haven't already, may I suggest you get Alan Beer's "Is Your Body Baby Friendly?" It will give you a lot of information which will help you evaluate issues, treatment, etc. It's just a really good starting place. See if any of it resonates with you.
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