I’m 36 years old and I have been suffering from brain fog and severe fatigue for last 3 years. Since last few weeks, I was experiencing pins and needles feeling across different parts of the body and also pain in legs. My doc ordered for a B12 test last week and the results are 81 pg/ml. I still need to talk to my doc about this but can you please share your thoughts about how to approach the treatment for this and also if there is a definitive way to know what has caused this deficiency. FYI, I’m not a vegan/vegetarian. During Dec 2019, I have undergone H. Pylori treatment and cleared it, not sure if it has anything to do with the deficiency. Please let me know the important things I should ask my doctor.
Thanks,
Stan
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Trinkler27
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Unfortunately there isn't a definitive test for cause - there used to be but it is no longer available (Schilling Test).
If you aren't vegetarian/vegan then your extremely low levels must be down to an absorption problem. Your levels are extremely low and you have neurological symptoms so your initial treatment needs to be aggressive - B12 injections every other day 3 x a week until symptoms stop improving. Whilst very high dose oral B12 can be effective in maintaining B12 levels in some people it is going to be very slow in raising your B12 levels and raising them is urgent.
I'd suggest that you talk to your GP about the possibility of a nurse showing you how to administer the injections yourself during the current pandemic. They can be done subcutaneously as well as intramuscular but the licensing arrangements in the UK mean that this method isn't mentioned in the BNF in the UK but you could discuss this option with your GP as it may be a be a bit easier (and safer) than going for IM injections if you are doing them yourself.
H pylori can cause B12 deficiency but if you have been free from h pylori for a while then I would have expected the effect of that on B12 absorption to have reversed, implying there is something else going on. The relationship between h pylori and PA is quite complex as PA creates the right circumstances in the gut for h pylori to occur whilst h pylori may be one of the circumstances that damages the gut in a way that may facilitate the development of PA but mechanisms are far from clear - just correlations at the moment as far as I am aware.
Link to the latest recommendations by the BCSH on treatment of B12 deficiency and B12 absorption problems during the pandemic
Thanks for the detailed post, I’m in the US, I’ll see if anything is different here regarding injections. I have been free from H Pylori for at least 6 months now.
I was wondering about starting B12 too early and lose the chance to find the etiology of the issue. But I feel some sort of pain around the lower waistline in the back and it doesn’t feel like it is something simple.
Thanks for the clarification on location - there aren't any national standards in the US - and treatment can be pretty patchy - the AAFP has this page which points to UK standards in part - it's not a perfect article but at least the two combined may help you have a useful conversation with the doctor.
The B12 used in the US is generally cyanocobalamin - and loading treatments vary from daily to weekly - but it would be a good idea to emphasis that your levels are low and loading needs to be aggressive.
Just got a call from my doctors office saying that he is on vacation and he asked me to start on a 2000 mcg pill once a day for one month and then 1000 mcg a day. It seems like there is no choice to discuss injections. Any tips on this?
you could try ER armed with the results and see if they can give you an injection - may be ring the doctor first saying that is what you plan to do as the situation is really urgent and can't really wait, given that you have neurological symptoms.
you could also try the tablets but I'd be inclined to take a lot more than they recommended if you have to use that as a fall back. At most you will be absorbing 1% of the amount in the tablet so getting your levels up will be very slow with the tablets.
Thanks, our insurance has different levels and I would not need any referral to see any specialist. But as my physician is out on vacation, I have requested for another doctors appointment for later today. I’ll let the doc know about my concerns and ask if she would prescribe injections.
Just wanted to update, she was saying that at this point there is no reason to believe my body is not absorbing B12 and so they are asking me to try pills for 2 months and may be after that they will do more tests and check if they need to do it intravenously. It seems like they are not concerned about neurological symptoms at all. Well, I will try and see.
Sorry that you are stuck with this - unfortunately it is far from uncommon when it comes to B12 deficiency. I find it hard to understand how they can conclude it is a dietary deficiency or possibly related to the h pylori this long after treatment.
Hi. I too am in the US with similar symptoms. In my case histamine and histamine liberating ingredients, foods and medication contribute to the lower back aches and pain. So too high oxalates. I do vagus nerve stimulation and Feldenkrais movement's to deal with the pain issue as found that pain killers worsened it.
If your H. pylori infection was cleared up 6 months ago, and you eat a sensible diet (meat/fish several times a week) then you almost certainly have an absorption problem, and that problem is almost certainly Pernicious Anaemia.
There is no definitive test for PA. However, it is caused by an autoimmune attack on some of the cells in the stomach. One result of this can be high levels of the hormone gastrin in the blood. You could ask your doctor for a test for hypergastrinaemia. If it is high then you almost certainly have PA.
You need to get your B12 levels raised as soon as possible. In the USA, where cyanocobalamin is used, I would ask for injections every day for two weeks, moving to one a week for two months, then one a month. If you find symptoms coming back before the month is up then you need them more frequently.
If your diet contains enough B12 (if you eat meat/fish daily) then there will be little point in the tablets because you obviously cannot absorb B12. The damage your deficiency is causing will get worse. because you will not be able to absorb the B12 from the tablets.
If, however, you don't eat enough meat then it's possible that your deficiency is dietary. In that case the pills are a good idea as you can take those forever, rather than having to have injections.
The issue is your gut cannot get sufficient b12 from your food - tablets essentially are food and will not be processed either so they don't work.
B12 can be active or inactive - you could have healthy levels of b12 but they could be inactive and useless. For that reason, further testing after an initial low reading should not be carried out and it is policy in the uk that we dont carry out further b12 tests. Treatment is based on symptoms and is life long.
There are long term health issues, potentially serious, if you dont get active b12.
I would start injections immediately. Im not sure how it is in the usa, but here we can purchase or own b12 and syringes etc. These have worked out at 75p (less than a dollar) each including needles, swabs, syringes etc.
Your treatment will be symptom based rather than diagnosis based which can be frustrating - everyone needs different attention.
I have been self injecting in my thigh every second or third day at home since september last year, with some trials of longer periods in between. I expect to eventually not need them as frequently. I did not get my Drs permission to do this - I took the decision to do it for myself, informing him that I have done so.
It is a big and scary step to take, but the good news is it can be life changing and you will notice a huge difference.
Also, there is no danger of toxicity from b12. Some Drs will say there is toxicity but when pushed, there is no evidence in the slightest to support that. The NHS clearly states that there is no evidence of toxicity. I think that is a kneejerk reaction - there is toxicity with some vitamins and minerals for sure.
The brain fog and lethargy are terrible. You will really notice a difference once you start the injections.
I’m here in the US. Tell your doctor you want shots not pills. Don’t take no for an answer. If he/she refuses, find a new doctor. Your level is very low. You need loading doses of B12 injections. The standard protocol in the US is one shot a week for 6 weeks and then maintenance shots of once a month for the rest of your life. If you were able to absorb B12 through food you wouldn’t have such a low number.
Thanks, I do need to have that conversation with the doctor. It doesnt seem like a bad idea to question his logic especially when AAFP suggests injections for people with B12 under 150.
Well brain fog and fatigue could easily be thyroid, too. And when my son had a (at the time undiagnosed) problem with gluten, he had terrible pins and needles and fatigue / brain fog too.
Thyroid is something that would normally be ruled out. I don’t know whether coeliac is routine - if you have no GI / other symptoms.
While Cyanocobalamin is standard here, you can request Hydroxocobalamin or Methylcobalamin as both are readily available. Odds are the pharmacy will have to order the
Hydroxocobalamin which should only take a day or two to get in. The Methylcobalamin will be made at a compounding pharmacy which will take longer (4-5 days).
So if/when you get that prescription, take your pick as to the kind you want and request it.
I started out on Cyanocobalamin, switched to Methylcobalamin where I was on a jab every other day for a month then once per week for a few months. I then switched to Hydroxocobalamin.
I was feeling quite well until I decided to go the oral route. Tried 2000 mcg Methylcobalamin per day for a few months. Didn't work at all. I slowly sunk back to very familiar symptoms. I'll admit there were days I didn't take any, so that probably blew that experiment a bit.
Fight for yourself.
Edit: just wanted to add that what Gambit62 shared about passive absorption is true. You would get about 1% of the oral dose. If that's 2000 mcg per day, you'll only be getting about 20 mcg. With neurological manifestations, that would be a long and perhaps unsuccessful slog. With someone showing those physical signs, you would want to flood the body with Cobalamin....hence frequent injections (at least to begin with....loding dose).
If that were true and you were getting 20 mcg then that is 8 times the recommended daily intake.
That would be 600 mcg a month. So you would be getting more B12 inside your body than if you were having a 1000 mcg injection every two months (which is the most often B12 is licensed for in the UK).
If that were true then you wouldn't need injections at all.
I am a 50 year old female and suffered almost debilitating symptoms - couldn’t walk a straight line, severe leg pain, brain fog, fatigue, pins and needles in feet, hands, face etc. I thought for sure I was dying. My regular doc dismissed me after about 5 visits although my b12 was “low normal.” I found a neurologist at Cleveland clinic who ran an MMA blood test and it was very high and he diagnosed me w b12 deficiency and started me on their standard dose is once injection a day for 7 days, then once a week for a month and then monthly. I felt great improvement in the first week but when I got to the monthly shots, they were too far apart and my symptoms came crushing back. He was ok with me doing every 2 weeks so that is where I am now. By day 8, I need an injection though. It’s a tough puzzle to solve. For now, I wait as long as I can (day 8-10) and then I do my own (well, my neighbor who is a nurse does it because I can’t seem to jab myself!). I am overwhelmed with anxiety about it though because I just wonder how long this will go on. I feel like I will need them forever even though my intrinsic factor test was negative and I’m not a vegetarian. Somehow at age 50 I just stopped absorbing b12. But thank god for the Cleveland clinic - they gave me the appropriate dose so at least I can manage my symptoms.
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