Hi all, Not been on here for a few weeks due to feeling exhausted. I've managed to complete the Active B12 test (thank you Richmond nursing in Llanelli) for fitting me in for the blood draw.
I waited with baited breath for my test results to be put on my Medichecks account and I was so shocked when my active B12 came back as 150.
Can I ask you more knowledgeable people if I can still be deficient at this level.
Also, my vitamin D has risen whilst I tested out taken oral capsules of D3&K2. I did this orally as I've managed to put weight on (7lb) so thought wow, I must now be absorbing somewhat through my stomach due to this blood test result (D3&K2).
It's been nearly 5 years since my vili were damaged by my suspected Celiac disease ( no diagnosis as I've been Gluten and wheat free for the whole 5 years). So I've been trying to introduce vitamins slowly, then get tested to see if oral medication will absorb.
So, I have now purchased top quality sublingual B12 and have been taking one under the tongue for 1 week.
The crawling sensation on my lower legs has been cut by 80-90% !!!!! .... It used to be a constant annoyance but now I hardly notice it. I still feel exhausted, muscle pain, numb fingers and toes ect but what I really wanted to ask is this.... Is the Active B12 result of 150 in the range of "normal" as I cannot find any information on this.
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Allywales8663
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Active B12 is used here in Australia a bit - the range that our test results say is 40-200 pmol/l.
Mine was 52 and was classified as “probably not” deficient but when combined with the Serum level of 172 (which was also considered borderline), my doctor erred on the side of caution and began injections.
I would say 150 is probably good? But also if you’re treating it, testing your numbers isn’t always helpful. If you’ve only been treating for a little while and have had good results, keep going and don’t worry about the numbers
I don’t think there hasn’t been enough studies with the active B12 levels
Hi PlatypusProfit8077,No, I was not taking any form of B12 supplements for over 4 months as I knew I had to be free of them for this test. I have now hit a wall... Intrinsic factor came back as positive, family history of B12 deficiency plus I have all the symptoms. I'm truly disheartened, I suppose I will just have to resign myself to feeling this ill for the future. I will keep taking the sublingual supplements as, at least that horrible crawling electric shock sensation has nearly fully stopped. Small mercies.
This flowchart from a UK B12 document suggests that doctors should think about continuing to treat if symptoms have improved even if tests such as MMA, homocysteine and holotranscobalamin have normal results.
Yes , your B12 seems quite high . The only suggestion that I have for you , is to try self-injecting B12 , instead of using the sublingual tablets , which seems to be only partially successful . When I had what turned out to be P.A. , I tried everything except injections, to no avail . Injections worked! Injections would cost you about £2.00 each , everything included . If you want to try self injecting, I can send you the necessary information.
Goodness , only just noticed in your reply to Platypusprofit8077 ,that you had a positive intrinsic Factor Antibodies test, which means that you have P.A.- so your GP should be treating you with B12 injections anyhow . ……. Make sure that you get injections . You should get 6 injections over 2 weeks at the start.
Hi Wedgewood,Regarding my intrinsic factor test. My results were 1.63. this has caused a bit of a stir as I used the guidance from a well known hospital in England who state results between 121/1.52 negative, anything about 1.52 is positive.
Then we have the u/ Au/ arguement. Arbitrary units V units. This I believe is something to do with the calibration of the machine doing the testing. So my GP had dismissed my test result and states that I am negative because they now grade the results between 0-20.
Once again I've argued the toss stating you cannot interrupt a test with clear guidelines of between 1.21-1.52 u/Au then turn around and say that my score of 1.63 is irrelevant? I will try and find my copy of that test result and post it on here. I truly am doubting myself these days? Maybe I'm going mad? Am I not seeing it correctly? Am indeed interpretating things wrongly.
All I know for sure is that I feel like death would be a release ( sorry if that upsets anyone who has lost someone dear) but it's how I feel.
I can only say that SYMPTOMS should be treated , not blood test results . Otherwise madness ensues . As you see, doctors will duck and weave and split hairs not to treat with B12 injections. It’s the employing of nurses for the injections that they want to avoid at all costs . And they are succeeding.
You have IF result, family history, symptoms and a response to sublingual. On the other side your active result is strangely high. A trial with injections are probably warranted.
Hi Cornwaller, I seem to have a lot going on which apparently makes thinks even more difficult for them to diagnose. My parietal cells test was skewed due to a AMA test. They didn't even tell me the results, just said unreadable? Also the positive ANA test coming back with speckling on the hep-2 didn't seem to bother them as they stated the were unsure of the clinical significance. I pushed and pushed as I had a very good idea that I have one or more autoimmune conditions. They seemed oblivious to this. Then out of the blue... 11 months later, I get a Ask my GP message telling me I have PBC. This determination was founded on my ANA results.
How ? You did not repeat the ANA test. To my knowledge they do not keep the original sample of blood? So how was this conclusion arrived at.
Pushed for more tests as I knew what to ask for. Homocysteine normal but the MMA test was declined at the laboratory as some jobs worth wanted to know the relevance of the test.
To put it mildly I flipped. Basically tell the GP via Ask my GP to tell the laboratory to butt out as they had no Idea what my symptoms, family history and suffering was like. Stick to doing the blood analysis.
Last message back said that pathology had been contacted, GP waiting for guidance as this was not his niche of expertise. Then said GP went on holiday for 3 weeks, so I'm still waiting.
I have annual leave soon from work so I'm going to spend that time contacting P.A.L.S and making a complaint.
Your intrinsic factor antibody test means you have PA. You should be getting injections of B12 at least every other day. You could continue with that often until you are no longer tired, and most important, your fingers and toes are no longer numb. People with PA can get nerve damage in our extremities. It is important to get adequate treatment to make sure the damage is not permanent. When you stop having symptoms, you can try spacing out the B12 injections to find your maintenance dose. Ideally, you will get B12 often enough to keep your symptoms completely at bay. If you can't get adequate treatment from your doctor, you might need to self-inject like many people on this forum do.
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