The Saga Of A B12 Deficiency - And How To Treat It
Disclaimer: I am not a medical practitioner. This article is my own experiences, and my own independent research aimed at helping you understand a B12 deficiency. Please be sure to consult your own medical professional and do your own research on this subject as well.
I’ve not felt totally myself in ten years. It seems to be that one thing triggers another. But due to being young and quite driven, it wasn’t until about four years ago that my sense of well-being really started to decline. And this year, in 2020, I wasn’t able to ignore or deny it anymore.
When you are chronically ill, especially identifying as a womxn, society as a whole seems to want to sweep your existence under the rug. The social aspect, and the personal / existential, are huge pillars in this difficulty, but those elements aren’t what this piece is about, as this is entirely about helping you understand and navigate the details of a vitamin deficiency, specifically vitamin B12, also known as cobalamin. I’ve learned a lot, and can safely say I know more than all of the doctors I encountered on the subject - unless they were simply denying me my rights out of sheer pride. I honestly wouldn’t put it past them at this point, but for the sake of sanity, let’s just say they’re undereducated on this topic.
So firstly...
What Is B12 Deficiency?
Vitamin B12 is one of the most important vitamins in our body. It is involved in so many processes. It helps build DNA, for one, keeps blood healthy, maintains the health of nerve cells, keeps your brain in good balance, helps with ATP production (cellular energy) and the list goes on. When deficient, it can wreak havoc on all systems because of its integral role.
The following is a list of B12 deficiency symptoms, but please bear in mind that this will vary for everyone, and is likely an incomplete list.
~ Fatigue
~ Peripheral neuropathy (tingling, buzzing, humming sensations, nerve pain and twitches in feet, calves, legs, hands - but truly can be anywhere in the body)
~ Brain fog + issues with memory (word recall, short term memory issues, just generally feeling cloudy and “off”)
~ Mood swings, irritability, anxiety and depression
~ Digestive issues, constipation
~ Dental issues (easily broken teeth)
~ Dizziness + gait problems (ataxia)
~ Rapid heart rate + palpitations
~ Painful tongue, canker sores
~ General “malaise” feelings, aches and pains
~ Shortness of breath
So as you can see, it’s a multi-system situation. And yes, these symptoms can be covered by other health issues, so it is important to narrow in on your quest with a select few tests. But first, we will go into the “doctor maze” and discuss what I, and countless, countless others, usually come up against when trying to weed out this health issue.
This section is very important so please do not skip it. Armed with more knowledge you will (hopefully) be able to avoid being turned away or dismissed by medical professionals.
Causes of B12 Deficiency
Pernicious Anemia - an autoimmune condition. It occurs because of a lack of something called Intrinsic Factor, which is a glycoprotein that is secreted by the stomach which enables the body to absorb B12. In people with PA, antibodies to IF will be found. Parietal Cell Antibodies, which, in the same kind of autoimmune response, will attack Parietal Cells. Parietal Cells produce IF, so if there is an autoimmune response up the chain of command, we end up with little to no IF, and Pernicious Anemia results.
H. Pylori - or helicobacter pylori. A bacteria that infects the stomach lining. This can lead to reduced absorption of B12.
Atrophic gastritis - inflammation of the stomach lining. This can be caused by H. Pylori, or chronic gastritis.
Crohn’s disease
Irritable bowel disease or irritable bowel syndrome
Celiac disease - gluten intolerance
SIBO (small intestinal bacterial overgrowth)
Stomach surgery / gastric bypass
Certain prescription drugs
Excessive alcohol consumption
Tapeworm
Extended periods of veganism or vegetarianism with no supplementation of B12
Long periods of chronic stress leading to general gut inflammation.
All B12 deficiencies are as a result of the body’s inability to absorb the vitamin correctly. B12 has one of the most complex metabolic pathways of any vitamin or mineral, so it is no surprise that any of the above inflammatory conditions (and most of them are inflammatory in nature) could lead to this decrease in efficacy.
Anemia Blood Signs and What To Look For In the CBC (Complete Blood Count)
Diagnosing a B12 deficiency is often NOT SIMPLY LOOKING AT THE B12 SERUM LEVEL IN THE BLOOD. Please read and reread this over and over and over again. This is THE SINGLE MOST IMPORTANT POINT TO UNDERSTAND.
If you have been supplementing with B12 at all - and this includes energy drinks, collagen powders, multivitamins etc - your blood serum levels will be elevated even if you are not properly absorbing B12 in some cases. This confuses doctors and patients alike, and this may be the primary cause of untreated B12 deficiencies. It was in my case, as my levels always looked within normal range, and sometimes even abnormally high.
In some cases, B12 serum will be very low and this will be the only necessary test to discover the problem. But also keep in mind, the "normal" ranges used in medical practice are a) different in every country and even many different offices, meaning it is somewhat arbitrary and b) the low end of a “normal” range for many things is abysmally low - and even if you score within the low end of normal, you may be quite sick. So if you are within “normal” range, yet you still have many of the above listed symptoms, this is what you can look for in your CBC to help understand what’s going on.
You do not have to be anemic in order to have a B12 deficiency, and we will cover that in the next section. But unfortunately for many of us, we do become anemic because the signs and symptoms of this deficiency take a good while to develop, and by the time we’re quite sick, anemia can be found.
This is one of the areas that doctors greatly failed me and have failed countless people. Some know what to look for but many don’t. So it is important, again, that you arm yourself with the knowledge below.
What is Anemia?
In short, anemia occurs when there is not enough hemoglobin (a protein that carries oxygen to cells, organs and tissues). This generally occurs because of not enough red blood cells and hematocrit (percentage of total blood volume that is red blood cells). This is usually caused by something impairing the RBC production in the bone marrow - in this case, due to a vitamin B12 deficiency.
From what I understand, all B12-related anemias are Megaloblastic Anemias - this occurs when large, immature red blood cells (megaloblasts) are found in the blood. Large RBCs have a difficult time exiting the bone marrow and as a result hemoglobin is not transported efficiently.
At a glance - what is the CBC?
A CBC blood test is your Complete Blood Count. It generally measures the following:
White blood cell count (WBC)
Red blood cell count (RBC)
Hematocrit - the percentage of the total blood volume that consists of red blood cells
Hemoglobin - a protein that carries oxygen to your organs and tissues, and transports carbon dioxide back to your lungs
Physical features of your RBCs:
Mean Corpuscular Volume (MCV) - measurement of the average size of your RBCs
Mean Corpuscular Hemoglobin (MCH) - average amount of hemoglobin inside of your RBCs
Mean Corpuscular Hemoglobin Concentration (MCHC) - a calculated measurement of the average concentration of hemoglobin inside of RBCs
RBC Distribution Width (RDW) - measurement of the varying sizes of your RBCs.
There are a few other features of the CBC but for simplicity’s sake we will focus on these because these are the markers for anemia if there are any to be found.
RBC count - if low, or on the low side of normal range, this can point to anemia or B12 deficiency that will lead to anemia if left untreated.
Hematocrit - if low, or low side of normal range, can point to anemia or B12 deficiency that will lead to anemia if left untreated.
Hemoglobin - if low, or low side of normal range, can point to anemia or B12 deficiency that will lead to anemia if left untreated.
MCV - if high, or high side of normal range, can point to anemia or B12 deficiency that will lead to anemia if left untreated.
MCH - if high, or high side of normal range, can point to anemia or B12 deficiency that will lead to anemia if left untreated.
MCHC - if high, or high side of normal range, can point to anemia or B12 deficiency that will lead to anemia if left untreated.
~~~ Important point to mention ~~~ iron deficiency anemia (which can happen concurrently with B12 deficiency anemia) pulls down MCV values. So an MCV value for B12 deficiency may be lowered more due to iron deficiency, further confusing matters. So it is important to also know your iron stores (ferritin) levels, and if they are low, you will know that your CBC will be affected by that deficiency as well. Iron deficiency anemias have many of the same symptoms of B12 deficiencies but do not, generally, present with neurological issues.
Deficiency Without Anemia: Blood Tests To Further Investigate
As I mentioned above, you do not need to be anemic in order to be B12 deficient. Sometimes the deficiency is subclinical and does not show up in the CBC. Or sometimes the CBC is just borderline and so doctors will pay no mind. So here are the blood tests you can request if you are not satisfied with your diagnosis, or lack thereof.
Please bear in mind that because some doctors and naturopaths do not understand this condition or what to look for, obtaining these tests may be difficult and you may need to seek out multiple practitioners in order to get the green light.
Before testing: stop ALL B12 supplementation for as long as possible, 4 months is optimal. This is so that the results are not skewed.
Homocysteine (blood) - an inflammation marker. If homocysteine is high, this could mean that B12 is low. But this test is not necessarily sufficient on its own, as homocysteine can be heightened or lowered based upon B12, folate, and thyroid values. You’ll want to ensure that you know what your thyroid values and folate levels are, prior to testing.
MMA (blood or urine) - essentially a compound that reacts with B12. If low B12 is active in the blood, MMA will increase. It is a very sensitive test and quite useful for diagnosing a deficiency.
Holotranscobalamin (Holo TC) (blood) - measures the active B12, aka what is being used by the cells. This is the single most accurate test available, but unfortunately is not widely available and is not yet the gold standard of B12 testing. If you can get this test though, do it. It is even available for home kit testing in some places such as the UK.
Folate RBC (blood) - measures the amount of folate in your RBCs. Important to know, because a folate deficiency has a very similar presentation to a B12 deficiency. Adequate folate levels are necessary to begin B12 treatment.
Potassium (blood) - important to know, as adequate potassium levels are necessary to begin B12 treatment.
Once you have gathered all of this information, it is time to move forward with a treatment plan, outlined below. However, you may not have extremely problematic blood and urine levels of the above tests yet STILL are deficient.
How is this possible?
Again, this was my case. I was likely deficient for quite some time - and that deficiency turned into megaloblastic anemia that my CBC reflected in 2016, 2017, 2018 and 2019 lab tests. In 2020, I set my sights on a strict autoimmune paleo diet and rid myself of all known allergens and therefore inflammation. When I got my CBC done, I was already 4 months into the diet, and the copious amounts of B12 I was consuming (both through my diet and through supplementation) amounted to the gap closing on my anemia - but not the damage done by the deficiency that was left untreated for so long.
Unfortunately, when nerve and neurological damage is done, it needs proper treatment to be healed. Think of it like a home that has been burned by a fire. If the walls are never rebuilt and painted, the house still looks and feels ravaged by fire.
So in the end, there are many, many roads that can lead here, to treatment.
Treatment
I was very, very resistant to doing B12 injections. I mean, who wants to inject themselves with a needle or have someone else do it? I suppose there are some people, but I’m certainly not one. After discovering all of this, I was adamant to find a way around it, especially since it seemed like I was healing from anemia. But the amazing folks at my B12 group on facebook, called B12 Wake Up reminded me over and over again that the only way to be certain of healing from the deficiency is through loading dose injections.
Here’s why.
Oral (aka swallowing and allowing the digestive system to do its work) and sublingual (dissolving under the tongue, and some goes into the bloodstream) supplements are inefficient. If you have Pernicious Anemia, for example, you simply cannot absorb B12 due to the aforementioned lack of Intrinsic Factor. And as we covered, there are plenty of absorption issues that are not autoimmune in nature that can interfere with your ability to metabolize B12 orally.
So what about sublinguals?
In very, very rare cases, this method can work. There are some studies that reflect it - but the skepticism lies in the sheer inability to know just how much of any given sublingual you actually absorb. I scoured the internet trying to find out what the average absorption rate may be - and most sources agree that it is often lower than 5%. So if you were taking a 1000mcg dosage of sublingual B12, you would be absorbing approximately 50mcg of the vitamin. To heal and treat the deficiency, you need to be getting 1000mcg daily until symptoms no longer improve. So this would mean taking 20 of those sublinguals a day.
Injections with cofactors are the way to go.
Once you’ve wrapped your mind around doing the injections, it is time to find a safe place to do your first one. This can be a doctor’s office, clinic, naturopath’s office, spa, or - if all else fails - you can do the first one yourself outside of a hospital in a car. This is what I had to do since everyone else had refused me. It was scary, but totally fine in the end.
The reason why you must do your first one in a safe setting is because of the minuscule chance of anaphylaxis. It is so rare but just in case, it is better to be safe than sorry - as this reaction can come on quickly and be life-threatening. Generally speaking, there is nothing to worry about. The chances are quite literally one in a million.
Injections 101
As mentioned, loading doses of 1000mcg a day (or every other day if taking hydroxocobalamin, as it remains in the blood for longer) are recommended until symptoms no longer improve. In most places in North America, this is available over the counter and you do not need a prescription.
Needles - the higher the gauge, the thinner the needle. In my opinion, anything higher than 25g is good. You only need the syringe to be 1ml (1ml = 1000mcg) but getting larger syringes is fine. The length of the needle needs to be more than 1cm. You do not necessarily need to do intramuscular injections (IM) and can do subcutaneous (into fat). Needles, depending on how thin or large you are, should be anywhere from ¾ inch to 1.5 inches in length.
Injection sites - I prefer my thighs, but many people also do their tummies or arms. Find what is comfortable for you.
Be sure to watch a few videos on YouTube on how to safely inject before you do it yourself!
Cofactors
It is crucial to mind your other vitamin and mineral intake when you increase the dosage of B12. The three most important cofactors for B12 are folate (or folic acid), potassium and iron. Iron is not depleted by B12 increase but as mentioned earlier in this article, it often is a concurrent deficiency and can wreak havoc on the body in similar ways (anemia) so it is important to make sure, especially as a menstruating female, that ferritin levels are above 100. A liquid iron supplement with as few other ingredients as possible is generally best tolerated and must be taken 1-2 hours on either side of a meal with at least 500mg of vitamin C.
Folinic acid, folic acid and methylfolate are all valid forms of folate, and 5g should be taken daily with loading doses.
6000-8000mg of potassium should be the daily goal. A couple of potassium-rich smoothies are sufficient, using foods like avocado, banana, spinach, mango. Sweet potatoes, dried fruits, broccoli and mushrooms are also good sources.
Take a B-complex as well, to keep the other B vitamins in balance.
If you have nerve damage from the deficiency, upping your intake of healthy fats and proteins is a good idea too. Olive oil, avocado, fatty fish, lean meats, nuts. Myelin is made from lipids (fats) and proteins, so focusing on re-building can only help.
A Note On Methylation
Some people do not tolerate methylated vitamins very well. I am one of those people. This can be due to a mutation in the DNA, MTHFR. This can be easily tested for. But not all people with MTHFR will be sensitive to methylation, it is simply a possible reason for the reaction.
Methylcobalamin is one form of B12 that is methylated, and methyfolate is the methylated form of folic acid. If you are taking these forms of the vitamins and you find yourself feeling very anxious, irritable, overstimulated, depersonalized, overly energetic etc - you may be having a bad reaction. The great thing is that there are other forms of B12 and folate which will not cause overstimulation. It’s just a matter of finding out which ones work for you.
Conclusion
B12 deficiency is an under-studied, often misunderstood illness but it has a very straightforward treatment. You cannot overdose on B12, and it is generally considered very safe - despite what some medical practitioners will say. You pee out what your body does not need or use, as it is a water-soluble vitamin - so there is no harm done.
If you are encountering resistance from doctors, just know to trust yourself. Trust your body. Don’t allow yourself to be gaslit or dismissed. Seek out multiple practitioners if you must. And as mentioned, if all else fails, it is perfectly ok to take matters into your own hands - just ensure that your first injection is done in a safe environment and always, always take proper sanitary precautions and keep up with your cofactors.
You may very well feel worse before you get better. Or you may feel the same for quite some time, and see no signs of improvement for a while. Stick with it. Healing takes time, especially when it comes to the nervous system. You are not alone, and you WILL feel better.