You might remember my previous post: idiopathic B12 deficiency for 20 years. Always supplement. Usually test 400-600. Got a result of 1980+ but had taken a sublingual an hour before test.
I want to re-test to be sure this is not a sign of a "malignant process" (excessive serum b12 can be).
Blue Cross says serum B12 is no longer considered the go-to, valid test for deficiency. Therefore they won't cover (despite covering it in my well visit in the first place)
Blue Cross says that trans(holo?)cobalamin test is still "investigational." Therefore they won't cover.
So do you recommend I pay out of pocket for serum test -- despite it being a poor measure -- just to get apple-to-apple comparison to reassure me about "malignant processes?"
Should I also order any other tests and be prepared to pay out of pocket? (My folate has always been just fine.)
Thanks in advance!
Ashley
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Ashweb901
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Have you asked Blue Cross what tests they do recommend/cover for assessing B12 deficiency? It sounds as if they are trying to say that they won't cover anything, but they can't leave basic vitamin testing without coverage. If they did, they'd probably be in violation of the ACA (Obamacare).
It might be that they only cover the test when it is done in conjunction with some other tests (like homocysteine and methylmalonic acid). You could also ask your doctor what testing they recommend as a follow-up to your high B12 result to rule out malignancy. (I suspect it would start with a liver function test, but I don't really know.)
You could also check with your doctor's office and find out how they coded the B12 tests that Blue Cross did cover. It may have to be coded in a very specific way for the insurance company to pay for it. It is a very bureaucratic system. Sometimes all it takes is knowing what term/code the insurance company will actually accept.
Thanks, Galixie! Yes, my doctor's office did submit a pre-authorization form for it, so we'll see what actually happens. My doctor's office is totally not interested in this mystery at ALL (complete apathy), so I'm the one doing all the lifting.
Good news is my liver function tests (at least the ones they do with a well visit) were all good. I'm sure there are more liver tests that could be run, but my white count, kidney and liver values were all good.
I got my diagnosis of B12 deficiency 20 years ago, so it's not for diagnostic purposes. It's just to periodically check. And I was shocked to get 1980+ because I've never had more than 600. Typical is 400.
I'm not sure why you want to be tested. Is it to get your supplementation regimen changed?
If you're worried about the high levels, well that's to be expected when supplementing. 1980 isn't really that high. My last B12 test was 5999, which is the highest level that particular assay can measure.
I only want to be tested to rule out malignant process. I've had pelvic pain for the past year (seeing a specialist in January), and I have a family hx of cancer. It is very likely it's because of the supplement I took that morning, but I have never gotten a reading over 600 before, so I'm just checking to be sure. I know that high numbers are not harmful in and of themselves. Water soluble, eliminated by kidneys, etc. Because it can be a marker for cancer and because of the pain and hx, I just want to be sure.
High B12 can be an indicator but it isn't a test that will show up whether or not you have cancer or kidney problems - a high B12 would be an indicator that other tests need to be done to investigate the cause so you need to look into getting other tests done.
Exactly. But before I go on to other tests I want to double-check the accuracy of the first reading of 1980+ because I took a sublingual tab that morning. I've stopped taking them so I can test again.
Sorry but as fbirder says - it doesn't quite work that way - yes, taking a supplement will push the levels up but high B12 isn't the best way investigating the problems you are concerned about - and high 12 isn't the best indicator, or even normally considered as a potential indicator test for these things ... it is just that if it is done and B12 is high then it is worth investigating the other possibilities ... and even if the high is due to supplementation that wouldn't rule out the other possibilities being there as well. You need to focus on getting the more specific tests if you are concerned about other things.
Thanks much. Definitely seeing pelvic pain specialist and pursuing other tests (I have had a pelvic ultrasound and a colonoscopy). ONLY seeking to determine the level without supplementation to have an apples to apples comparison.
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