I've had a very difficult time finding any lab in the US that offers active b12 tests, it seems to be rare here. Does anyone know of any? I found a home test through a company called Biostarks, but it's very new and you have to get it with a package with a bunch of other tests, so it's a last resort. I'm in a very major city, so it's surprising that there's nothing.
My serum levels are high because I was self injecting and my doctor has told me to stop and that I shouldn't need anymore even though I'm experiencing pretty significant cognitive issues and neuropathy. My last shot was in March. All other tests were in the normal range (except for unsaturated binding capacity/transcobalamin, which was always very very low even before starting shots, but my current doctor have seems unconcerned about this). I was hoping a holoTC test might convince them.
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Lilbrahms
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Last time I checked, which admittedly was 2 years ago, there was no active b12 test from labcorp & quest, just the unsaturated binding capacity one.
Have you had the other tests? MMA, homocysteine, intrinsic factor and gastric parietal cell antibodies. The first 2 can potentially show (functional) deficiency as well.
If it's been a few years since you had IFAB tested, it can be worth retesting that as well.
You might also try calling around to local hospitals' labs, perhaps they'll know something about active B12. But if mma & homocysteine were normal, i imagine active b12 might also be in range.
Out of curiosity, do you self inject or only go via your doctor?
I was self injecting, but stopped at the advice of this doctor. I already ordered some from Germany, so regardless of whether or not I can convince I'm going to start again as soon as it arrives.
Good to hear! Go by symptoms. I've had every b12 test i can get commercially, always negative, even prior to shots. I still feel horrid if i don't inject daily.
You can get cyano from Canada fyi. But hydroxy without a prescription , indeed only from Germany.
I have an HMO, Kaiser specifically, so it’s not really an option unfortunately. Out of pocket expenses where I am would be at least a thousand so I’m trying to make due.
If it was not dietary why shots were started (but even vegans &vegetarians can still have an absorption issue), then stopping supplementation will adversely affect your health.
I would suggest you look into getting you shots on your own, in tandem with working to get reinstated with your doctor.
Some concise links, that have medical journal footnotes. Including about not testing during treatment.
Serum b12 will be skewed and thus it does not do ANY good to test b12 and any doc who does, doesn't understand b12 deficiency. Sad to say, this will be 90% of the docs in the US!!!!
We have all learned here that b12 deficiency is an extremely poorly understood problem despite the fact that there are medical journals to spell out the information of how to manage the problem.
Getting an active b12 test from an independant lab will not convince any doc of anything. They typically don't accept it.
if your insurance won't let you try other doctors, your best bet is to find a doctor (perhaps even a functional medicine doctor) and pay cash that will teach you how to self inject. Then get your own supplies.
there are several of us here in the US.
Frequent injections are the way to solve the problem. Expensive tests won't get you anywhere.
I went from 190 serum b12 and being bed ridden. Now very active after Doing frequent injections for 2 years.
I had the same problem where the original doc didn't think I needed the injections. I knew I did because I felt the difference and did my homework on it. I asked friends for a doc who would be willing to help and fortunately found one and all that did was teach me how to self inject and also rule out things, but in the end... it ended up being b12 deficiency. So unless there are any other labs that indicate an additional problem, I would focus on the b12 deficiency.
other things to test are thyroid, vit d, folate, iron (multiple tests for iron not just one).
Thank you! I'm sure you're right about an active b12 test not convincing them.
I was self injecting, but I was hoping to have doctor support so I could make sure everything else is in balance since I've had a few other deficiency issues. If that doesn't work out though my plan is to start self injecting again as soon as possible, I'm waiting on an order from Germany.
Pre-injections I was at 379, I was taking oral supplements that may have bumped it up. Despite having been diagnosed with celiac and Hashimotos 15 years prior and a family history of pernicious anemia, no doctor had ever previously tested me. I was seeing a great NP at the time who did a bit of research and put me on injections based on the cognitive and neurological issues I had. Sadly my insurance changed though
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