hi everyone, been looking at some blood test results that my dr said was normal but ive actuall read my b12 is actuall quite low.
the level is 224.
my symptoms over the past year have been extreme fatigue, blurry vision, vertigo ( started a month or so ago) , very dry skin,itchy dry scalp, upper back pain, insomnia, palapatations and anxiety. i just feel so unwell and its really getting me down.
i must also mention i have been a pescetarian for the last 2 years
does this sound like b12 deficiency? what can i do ?
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ozzyosbo
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What was the 'normal' range for the test you took? It's quite likely that you just sneak into the 'normal' range. Of course, that range isn't fixed for different people. Indeed, many suffer from a deficiency with levels higher than the bottom of the 'normal' range.
The experts recommend treating the symptoms rather than the numbers. Get my summary document that includes references to what those experts say - frankhollis.com/temp/Summar...
Take both along to the doctor and ask for a course of B12 loading doses. It can't do any harm and, if they work, your doctor will have been saved a lot of hassle.
Perhaps you could read a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" I gave a copy of this book to my GPs.
"Vitamin B-12, or Cobalamin, is the largest and most complex vitamin currently known to man. A slight deficiency of vitamin B-12 can lead to anemia, fatigue, mania, and depression, while a long term deficiency can cause permanent damage to the brain and central nervous system. Vitamin B12 can only be manufactured by bacteria and can only be found naturally in animal products, however, synthetic forms are widely available and added to many foods like cereals. Vitamin B12 can be consumed in large doses because excess is excreted by the body or stored in the liver for use when supplies are scarce. Stores of B12 can last for up to a year."
I'm not a medically qualified person but your pescetarian diet may partly be the cause of your low B12 although some "sea foods" such as clams, crabs, mackerel and tuna are high in B12, Eggs, cheese, some breakfast cereals and Marmite also contain B12.
Do you know what your folate (B9) level is as this is needed to help process the B12?
As others on here will say your doctor may prescribe you a course of injections if you cannot boost your intake from your diet.
Hi ozzyosbo...my level was 261 ( 192 Pmol) and was told it was fine. I had a postal Active b12 test and referred for an MMA at St Thomas and diagnosed with a functional b12 deficiency at blood and tissue level. I'd have needed to be under 130 for my Dr to acknowledge it as a problem! I've been ill for 17 years with ME and have a major amount of the symptoms for b12 deficiency, but it's been a battle! I can give you more details about the Active b12 test if you wish, it was very reasonable at £30 and the result finally convinced my Dr!
Keep on with your quest for good health, don't be put off, you know how you feel...
Hello Jo, could you please send me details of the postal Active b12 test. Could you let me know if it's a pin prick of blood that I can do at home or do I need to get a "test tube" of blood.
Hi I’ve just come across this post,I need advice please my b12 was 260 January last year and last test was 280 ,I’ve been feeling so unwell with crushing fatigue and weakness I just feel so awful I had dizziness for 6months,I was told too my b12 was normal by my doctor,I then found out from support groups that my b12 was low and begged my doctor for the loading doses ,I felt much better in them but he refused anymore so I had to start self injecting I’m on my 12th subcutaneous alternate day injection and I feel horrible still crippling low energy I’m so worried it’s somthing else😢,my active b12 was 112 does this mean It’s not b12 deficiency? Thanks x
Sorry to hear you're feeling so poorly. Have you got the results of blood tests, such as iron, folate, vitamin d, thyroid as its vital these are all at optimal levels for the b12 to work
What type of b12 are you injecting. I don't know anything about self injecting I'm afraid. If I were you I would start this as a fresh post as it may not be seen on an old post. Also post all of your blood results and you'll receive lots of help. They will be able to advise on self injecting.
Were you given 6 injections for loading dose? How often will the dr inject you now?
When you had the active b12 test did you have an MMA test also? Perhaps they didn't test that though if active b12 was high. It's very complicated it seems, people have trouble absorbing it and I guess there's a lot to be discovered about different types of b12 deficiency yet, as even with higher active b12 there are loads of people who still feel better after injections, so there's no hard and fast rule, which is why it should be assessed by symptoms in an ideal world.
I may be able to help more once your other results are available. Try not to worry, but I totally understand. It can make you feel so rotten and it doesn't feel like the Dr can give you the answers, but rest assured there are lots of lovely people on here who have a wealth of knowledge and can advise.
Thanks for your reply,no I have not had MMA I had to pay for the active b12 which was a waste of time as it was good at 113,I’ve been self injecting now for three weeks as advised by the b12 groups and dr Chandy a specialist in b12 deficiency it’s just not having that diagnosis I’m struggling with as to do I have a deficiency I’d rest assured knowing why I feel so bad,I’ve had thyroid test normal,but after shaking in thyroid group and here I’m told they aren’t normal optimal,but where can I take that with my doctor if they have my results as normal! It’s all such a worry x
I totally understand your worries. Are you still supplementing iron? I've been recommended on here to keep iron between 70-90. Mine was as low as yours and definitely adding t my symptoms. If I were you I'd be continuing with that and keep an eye on it. I've done finger pinprick tests to check iron, the one that includes saturation levels, etc, Dr's don't seem to readily check that. The last time I did one, even though my ferritin was nearly 60, the saturation ( I think that's the correct part, don't quote me on that, my info isn't at hand, but will check it when I can) was very high, which indicated I needed more iron and it was safe for me to take. So that was a handy way to check.
It seems to be tricky for me and many on here to keep ferritin up anyway, especially those needing b12. Low iron could be playing apart with your fatigue and dizziness perhaps?
Vit d doesn't seem awfully high, I was rec to keep it above 100. Now going to retest again to check.
Yes I understand it's so difficult when the Dr's won't listen, even when you present it all to them. Is there another dr in your practice that is more clued up on b12/thyroid problems?
There was a new dr at my surgery last year, who I thought maybe will know more in this area, and he told me he was god I knew about b12 because he knew nothing?! Not very encouraging is it.
Have you tried sending your dr a letter writing all of the information down, it may be taken a bit more seriously? I'm sorry I can't really help with what to do with your dr...but I'd certainly rec Dr Chandry, what does he recommend next?
Have you retested it since August? I was advised to keep mine up to 70-90. The breathlessness, dizziness, pounding heart after climbing stairs, etc seems to be more apparent if my ferritin lowers.x
The Active b12 is available from St Thomas NHS hosp, London £18 if u attend, £30 via post. It needs a referral from your Dr ( mine took bit of persuading, but agreed when I wrote to him in end). Blood needs to be taken end of the day ( had mine at 4.30 for 5.15 post).
Will add contact number on end. Quite simple process, they email u for some info, u receive a container/ envelope ( your dr needs to supply blood test tube) then post back with your signed referral, making sure your name, dob, sex, date/ time of test and NHS number on the tube of blood. My first one was rejected due to insufficient labelling, so had to pay and redo again. Results go back to your dr approx 2 weeks NOTE request a printout, I was told mine were fine and only found out via printout! Mistakes happen...
Active b12 needs to be between 25-70 to be referred for MMA ( no extra cost). This needs to be between 0-280, higher indicates b12 def. high MMA can also be indicator of thyroid, kidney, bacterial overgrowth, but if accompanied with lower serum and active b12 results, taken as b12 def.
To give u eg. My blood test at dr was 261 which I converted to 192 Pmol. It's said active b12 is 10-30% of this which equalised 19-57, so I thought I'd potentially need MMA test, which I did. My active was 27, then MMA was 708, very high.
I chose this way, rather than a pinprick because it was via NHS hosp and very reasonable at £30 and thought it would carry weight with my dr. If needed. Had I have hit a brick wall with getting referral, maybe I'd have tried the pinprick first, but would've been more costly and not sure it would have got me any further? But doctors vary so I'd suggest trying as hard as you can to get the referral! Also very cheap way of getting MMA if your active is lower, it usually costs £96 at St Thomas if ordered as a single test, and much higher it seems, elsewhere.
They also offer a homocysteine test which is another indicator of b12 def, but the sample needs to be spun, and my dr couldn't do this. Prob available at local hosp? I've since found out it measures a different enzyme in relation to b12, but also raised in folate and b6 deficiency, so not deemed quite so specific to b12 ? I personally struggled enough to get the one test in relation to how ill I was feeling, but in hindsight it could have proved valuable too, just seemed like too much to sort at the time!
I was lucky and this worked for me, but keep open minded with results if you go ahead and they don't prove to be low. Plenty have had higher active b12 results, it seems, and still improved taking b12. There seems to be alsorts of problems in getting accurate tests and being diagnosed and they'll no doubt find there are many ways of being b12 def in the future, that require diff methods to show this!
The current method via the Drs isn't reliable and they are supposed to go by symptoms, not much evidence this happens though. Then the ranges are set too low as well, no wonder so many are having difficulties.
Any other questions, feel free to ask, I'm fairly new, had a loading dose March/ April and still learning loads...keep on with your quest for better health, know it's not at all easy when you feel so poorly, but there's plenty of support to be found on here, don't know what I'd have done without it...take care
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