All Eyes on B12…
I recently finished up a book called Could it be B12? An Epidemic of Misdiagnoses and found it to be quite eye-opening. The authors are husband and wife and both work in the emergency room as a nurse and doctor.
The nurse, Sally, personally experienced serious health impacts of B12 deficiency and she continued to see symptoms of it with the patients that she saw. These symptoms were commonly misdiagnosed as something else. This sparked her passion to spread awareness about B12 deficiency—a passion that is evident in the words within the book.
Turns out B12 plays many key roles in your body including maintenance of healthy nerves, your brain, and the formation of DNA. It is essential for the production of red blood cells and is needed for a healthy immune system.
Vitamin B12 is produced in the gut of animals. So to obtain it you need to eat meat, poultry, fish or eggs. B12 is a water-soluable vitamin, which means it needs to be “restocked” frequently.
If you do not consume these things then supplementation is necessary.
The authors noted research that showed that vegetarian options thought to contain B12, like spirulina, tempeh or nori, are really “pseudo” vitamin B12. These pseudo versions are not “real” B12 and without further supplementation could still result in B12 deficiency.
What Causes B12 Deficiency?
A big take away I took from the book… even if you consume meat you still may not be absorbing B12. In fact, most cases of B12 deficiency stems from malabsorption problems
Metabolism of B12 is complex and is easily disrupted by a variety of problems that can stop B12 in its tracks. These disruptions come about as a result of issues with:
- genetics;
- digestion issues especially in those with low stomach acid, Crohn’s or celiac disease;
- metabolic issues;
- multiple surgeries (Nitrous oxide inactivates B12 in your body. Be aware that repeat surgeries, even short ones, increases your chances for B12 depletion)
- pharmaceutical use;
- the presence of mercury in your body;
- autoimmune conditions.
These disruptions help explain why B12 deficiency is so common, despite the readily available sources of this vitamin in the typical diet.
Symptoms of B12 Deficiency
As I read through the book, I realized that many of the issues that I’ve dealt with in my life could be a result of deficiencies in vitamin B12. Some of these symptoms include:
- Numb hands or feet
- Shooting leg pains
- Depression
- Infertility
- Abnormal pap smears
B12 deficiency can also cause nerve damage in your stomach, which prevents the stomach from emptying properly. This results in symptoms of bloating, heartburn, gastro reflux, nausea, vomiting and constipation. Those greatest at risk for B12 deficiency are those of us with autoimmune conditions, especially thyroid conditions such as Hashimoto’s or Grave’s disease. (That’s me too).
Hypothyroidism is often found in association with an autoimmune condition called pernicious anemia, which is the most common cause of B12 deficiency.
B12 Deficiency & Your Reproductive Tract
B12 deficiency is a leading factor behind infertility issues, which was news to me. This is because it causes abnormalities of the cells of your reproductive tract, which could extend to the lining of your uterus. This can result in anovulation and also interferes with the implantation of a fertilized egg. Therefore, B12 deficiency is very common among women with a history of infertility or multiple miscarriages.
Blood abnormalities due to B12 deficiency could affect the lining of your uterus and cervix, causing cervical dysplasia, or an “abnormal pap smear” that could be mistaken for pre-cancerous. This is something that I dealt with in my early twenties. My B12 levels were never tested before undergoing years and years of painful procedures to remove cells of my cervix for biopsy. Grrr….
B12 and Methylation
I have had a growing interest in the role of B12 since I got back my genetic testing results and saw just how many breakdowns are present in my body’s methylation cycle. I’ve learned that B12 plays a key role in methylation.
Your body needs ample B12 in order for folate to work and one of folate’s crucial jobs is to synthesize the nucleotide “building blocks” of DNA.
When folate is trapped in an unusable form, due to lack of B12, then it is unable to do its job properly. This forces your body to make changes in DNA structure that can lead to genetic mutations.
B12 deficiency causes a breakdown in a crucial metabolic pathway that detoxifies the potentially dangerous amino acid homocysteine. High homocysteine levels resulting from low B12, folate or B6 levels can cause your body to break down estrogens abnormally.
According to the book, low B12 levels is often a gateway to developing breast cancer.This made me wonder what role B12 deficiency plays in endometriosis? That my friend is a question of curiosity to be further explored 🙂
Testing for B12 Deficiency
It is pretty simple to test for B12 through a serum blood test, however the authors pointed out different factors that can skew the results, making this test alone less reliable.
These factors include the presence of high levels of folate (or folic acid), which can make the complete blood count (CBC) test appear normal even though a B12 deficiency exists.
B12 serum testing can also show falsely elevated results for patients with underlying liver disease, alcoholism, lymphoma or intestinal bacteria overgrowth. And as mentioned above, pseudo vitamin B12 in spirulina, temph and nori can throw off blood tests results.
According to the authors, the range of “normal” B12 levels is traditionally set too low. They suggest raising the minimum from 200 pg/ml to at least 450 pg/ml, since deficiencies start to appear below 550 pg/ml.
Since the threshold of “normal” is set too low by doctors, the authors suggest implementing a couple of more tests to make sure there is in fact a deficiency. These include a urinary Methylmalonic Acid test (MMA) and testing for homocysteine (Hcy) levels. When you are low in B12 the three lab results should agree with one another:
- Serum B12 is low
- MMA is elevated
- Hcy is elevated
The authors recommend supplementing with B12 if your serum B12 levels are under 450 pg/ml, regardless of what MMA or Hcy results are. Also, treat normal B12 serum but elevated MMA or Hcy results. The book gives further breakdown on what the ranges should be for each test.
How to Supplement Vitamin B12
If you find that you have a B12 deficiency then the authors suggest supplementing with at least a thousand micrograms of B12 everyday.
Keep in mind that not all forms of B12 are equal and not all B12 can be easily changed to what is needed for reactions in your body. There are three forms of B12: Hydroxy, methyl and adenosyl.
Hydroxy B12 (Hydroxocobalamin) is more easily converted to the form that is actually used for reactions in your body. If you are to supplement, this is the recommended form.
Those of us who have issues metabolizing B12 from food are often unable to make use of it efficiently in pill form either. If you are very low in B12 and have absorption issues then the authors suggest getting injections, rather then taking it in a pill form.
Injections get the largest amount of B12 to deficient tissues in the least amount of time. This is the recommended way to take B12 if you have a severe deficiency (less than 300-400 pg/ml). The authors suggest injections of 1,000 mcg once to twice a week for six to twelve weeks.
Apparently injections can be made at home with kits similar to those used by diabetics.
On the Positive Side?
After reading this book and gathering much more information on the importance of B12, I am very curious to see where my levels are.
The book includes a questionnaire to help you determine if you likely have a deficiency. My results showed that I likely do. They recommend getting tested before starting supplementation so you know just how severe the deficiency is.
The positive side is that if caught in time a lot of the symptoms of B12 deficiency can be overridden through supplementation. The book includes many examples of stories of people with chronic conditions that were nearly healed by adding in B12 supplementation.
Have you had your B12 levels checked? Do you supplement with the suggested high levels of B12? Do you have endo and low B12? Think there is a connection? Would love to see your thoughts in the comment section below….
Much Love,
I recently heard about a new oral prescription alternative to the injections called Eligen B12. I recently read that it works even if you don’t have intrinsic factor (so even if you don’t have normal gut absorption). Apparently it came out a month or two ago. Has anyone heard of it or tried it??
Sounds interesting. Curious to know if it’s helpful with absorption.
I have endometriosis, pernicious anemia, D deficiency, hypothyroidism, and had adenomyosis before hysterectomy when I was 29. I am now 46.
Several years ago, I went to my doctor with extreme fatigue, aches and pains all over, and pins and needles in my hands and feet. My eyesight got drastcally worse. He did the routine blood work and found nothing. He told me to exercise more and eat more nutritiously. I left frustrated and went home to do my own research.
While researching, everything was pointing to b12 deficiency. I went back and asked him if he could check for it. He tried to reassure me that I was much too young to have b12 deficiency and I ate meat and took vitamins. I begged him to check anyway, so he sent me to the lab. My b12 was at 193. He said it wasnt too terribly low, but he diagnosed perniciojs anemia and would start me on injections daily, then weekly, then monthly, then back off and recheck. Recheck…still low. Said I might need monthly injections for life. I started doing them myself at home after the nurse showed me how.
A few mo ths ago, I had normal bloodwork again, but he added a b12 test. My level was 396, and he wasnt going to refill the prescription because it was at a “normal” range. I argued with him that it was LOW normal because I do the monthly injections. If I stop, I will drop below normal again and be miserable! He agreed and refilled the prescription. I don’t understand this mindset on the b12. It’s not like its a narcotic!
Two years ago, I went to stay with my then 66 year-old mom who was diagnosed with cancer. She was very sick, could barely get out of bed, and had several symptoms that pointed to vitamin deficiencies. I told her oncologist and she said most of her symptoms were cancer related, and the numbness and pins and needles were due to the chemo. I asked what it would hurt for her to check it anyway, so she did. Mom was severly deficient in B12 and D. They started daily injections of b12 and a high D supplement. She felt amazing and breezed through chemo. The doctors were all amazed by her! I know that if I had not gone up there, she wohld not have made kt tbrough chemo, and they would have blamed it on the cancer. This is so unacceptable to me!!!
Wow. Thanks for sharing your story Tina. It is crazy how people are not routinely tested for B12 and how you have to beg to get it checked and prescribed to you. Good for you for taking charge and for noticing the impacts on your mother. It is up to us as patients to be advocates as the medical system, unfortunately, is designed to just keep us sick.
I have just checked my B12 from blood. I have 234, which is considered “normal” according to the lab norms (200- 900). I’m trying to conceive, so will be taking B12 supplements. I’m also on endo diet, limiting meat consumption, which doesn’t help with B12. Unfortunately, doctors say it’s a “normal” level, so there’s no chance to receive prescription on injections (required in my country).
Do you maybe know what the amount of B12 in oral supplements should be to raise the levels to 450? Thanks
I think it depends on which type of B12 you take: http://www.heathernicholds.com/nutrition/vitamin-b12-supplements
I had 150 (normal range was considered 170-700) and the doctors wouldn’t prescribe anything. They looked at my blood condition, I obviously wasn’t anemic and after them, since my blood is ok, there is no need of vitamin b12 suplements. I ordered some injections from Switzerland, since you cannot find them in my country, and drank them. Once a week for 5 weeks. It helped, but I don’t think it was enough.
Hi B.H. – That’s frustrating. Can you see another doctor?
“Normal” doesn’t mean “optimal” level….and that’s the vocabulary we have to use with some physicians.
I have been trying everything I can think of to get rid of my estrogen dominance symptoms. I have CYP mutations along with COMT. CYP genes are supposed to metabolize E2 into hydroxy-estrogens. COMT is supposed to inactivate hydroxy estrogens. Think this would explain why, when I took DIM, it actually made me WORSE? DIM helped my CYP mutations by converting E2, but then, because I also have COMT, I wasn’t able to inactivate the hydroxy-estrogens that were created by the DIM?
Does taking hydroxy B12 help COMT to function properly?
Do you think taking DIM along with hydroxy-B12 may do the trick?
Thank you for any help.
Anne
Hi Anne –
I wrote another article about the genetic breakdowns with estrogen metabolism and the tie-in with SULT. In the comment section a reader commented about DIM and how it can reduce sodium in your body, which can impact your adrenal glands. This ties-in with sulfation: http://peacewithendo.com/2015/04/genetic-mutations-estrogen-dominance.html
Do you know i f you have any issues with SULT, or adrenal fatigue? Maybe this is why things got worse when you took DIM.
I ran my genetic results through the tool at Nutrahacker.com and it came back with a recommendation for hydroxy B-12 for COMT mutations. Before supplementing with B-12, it would be good to check your lithium levels, which play a role in B12 conversion in your body.
I can’t begin to tell you how angry or hurt I am at the moment after reading this. For 10 yes, I told my GP that I thought I had endometriosis. For 10 yrs she told me that I only has painful periods. During those 10 yrs, I too had severe dysplasyia and underwent loop excisions, cone biopsies and to this day can’t stand smell of vinagar. I was unable to get pregnant which caused my fiancée (just took me about 20 minutes to remember that word) and I to break up as his mother was constantly asking for a grandchild. He left me and went back to his ex and tried to return 6 yrs later with a son to pick up where we left off. We were looking for our dream home when he left. The 10 yrs i had been telling my GP that I thought I had endo., I had to wait for her to go on sabbatical to ask her intern to send me for a test. She did and a laporoscopy came back positive. My GP, not so much. When she returned she was visablly angry and refused to acknowledge my results saying “IF” you have endo. I refused the treatment the gyno wanted to give me (I needed an add-back and injections but when I reaearched, I learned it was a drug for men with prostate cancer and like most drugs has long list side effects). I became really depressed BC of the breakup and BC, as a woman I couldn’t do what a woman was supposed to be able to do. A few yes later, I became really I’ll during a staff MTG
I couldn’t walk, speak or barely move and when I spoke I was really confused taking long time to answer questions
They thought I had internal bleeding and did a CTSCAN on my head which came back normal. For hours when I walked, I fell to one side and had shooting pain down my elbow to finger tips as if I had hit my funny bone so to speak ..shooting pain that I still have but not nearly as bad
All this time after the endo., diagnosis, I had been having bowel problems. I again asked an intern (same GP said I had irritable bowel but my brother has crohns and had also researched). The gastroentenogist said I had 3 strictures put me on a liquid diet and diagnosed me with “non definitive crohns disease” and basically forgot about me
I fired both my GP and my gi doc. I have since been on a disability pension living in deep poverty. I have no doctor and when I saw my GP last (I had recurring oral thrush, she insisted I take a HIV test (again) to which I refused. She labelled me schizophrenic..on the spot and from there on, when I went to ER, they laughed at me calling me a “GOMER” (i found out later it stood for “get out of my emergency room”). I am now basically alone. My friends have all faded away BC I no longer has energy to do anything
And when they tried to tall me into going I would get upset and angry BC I just didn’t have the energy. My latest crush has come and gone and I spent most days feeling suicidal. I use to be a marathon runner and gymnyst. I’m not schizophrenic (this came from a doctor that said she was patient centered a d specializes in narrative medicine- you can imagine my horror as a sociology/social work student who had to drop out less than 1 year before completing a honours double major). My foot is tingling with pins and needles as I write this, my tongue has fissures on the tip and burns and my cheeks are so red with bumps (I never got acne as a kid) but I did have severe eczema on my eye lids and inside elbows/knees. I can’t go to an ER anymore as they have red flagged my file as Drug seeker..yet when I collapsed a few months ago. I was taken to a walk in where they took me seriously only because they couldn’t get my temperature and something was wrong with my blood pressure. They gave me shot of torradol, I felt better and was diagnosed with kidney stones and sent home with a paper coffee filter and script of dilaudid. I still have the script that was never filled and had every intention on sending it to my old GP explaining it is not about wanting pain meda, it’s about wanting a normal healthy life. Since then I have also been diagnosed with lesions on my liver and inflammation ofy gall bladder. There is never any follow up and I can’t find a GP that will take me. I don’t know of I should be angry or just cry as I can’t explain the abuse of power I have experienced. All BC one doctor has a god complex and didnt want to admit she might be wrong
“Narrative medicine”… Rriiiggghhtt. I once told a doctor that if he told me there was a million dollars at the end of the street and if I walked there to get it; I could have it,..that I was so profoundly tired that I wouldn’t be able to. His response was he’s not in the business of fatigue. I still don’t understand what that means. Its been about 15 yes now
My life has been on hold for 15 yrs. I’m now 46, no job, no degrees, no life partner and no friends
When are doctors going to start listening to their patients? Don’t they take a ” do no harm” oath? Thank you for this article. I now understand why I have chest pain and why my breast hurts/armpits. I will be going to a walk in clinic tomorrow.
Hi Wendy. I’m sorry to hear of your struggles. Sending love + light to you.
Hi. Thank you for the love and light. I went to the walk in clinic where I had option to keep Dr as new GP. You guys are definitely on to something as my bloodwork showed my B12 levels were 227 pmol/L. The doctor said that I wasn’t deficient but insufficient. She prescribed me B12 injections (1000 MCG/ml once mth).I got the first injection Feb 1st. Nothing has changed since. The doctor told me that the pins and needles, acne numbness in tongue and intestinal pain etc (*exhaustion) have nothing to do with vitamin b12 insufficient. She wanted to put me on antidepressants and got angry when I refused. She also got angry when I told her I refused lupron and add back for endometriosis from my OBGYN and was even more angry when I told her I refused 3 surgeries for (2 resections and a fundo wrap). How can a GI doc tell you you need 3 surgeries when he only diagnosed me with “non-definitive crohns” shouldnt he be definite before chopping pieces out of people? I am going to have another colonoscopy ordered by the last Dr. She is also going to order nerve damage tests in 3 mths if the pins/needles don’t go away. I am looking for a new doctor as she likes to hand out pills also and thinks I’m crazy for questioning her. Thank you thank you thank you for this article and for being doctors who are serious about helping people. “They” wanted to xray my arm when I told them I have pins and needles..I refused and was labelled “ama” or gomer (get out of my er). I am tired of all this and agree with the comment above. What is the big deal? B12 is not a narcotic!! They wound rather give me dilaudid?!? Or surgery?!? Unnecessary tests?! Please keep spreading awareness writing journals blogs etc. You guys know what you are talking about!
Hi Wendy – Sorry to hear of your struggles. I hope you get your situation figured out. I’ve recently learned more about the Epstein Barr Virus and am convinced that it’s the cause behind a lot of my issues. It can cause that pins and needles feeling and exhaustion. Maybe that’s the underlying reason for you too? I wrote more about it here: http://peacewithendo.com/2016/11/epstein-barr-virus-ebv-blame.html
OMG, Wendy! I hope you finally got help. I ordered the Hydroxycobalamin online from Germany. Found it on Amazon de but then copy pasted into browser and found it for cheaper w free shipping. My first batch is on the way! I went to shop for an injection and unfortunately reacted to the methly version, I think. Or it could have been in if the other vitamins but I had a seizure which I’ve never had, so be careful. The first dose should be administered in a clinical setting. Be well!
I am so relieved I came across this blog. I have had 1 B12 injection. Normally during my cycle, I am rolling around on floor in agony. I am sitting here typing you. I have not taken any NSAIDS (I have to take about 4 every 4 hours to relieve pain). I have had a coffee. Usually I have to avoid coffee, chocolate/sugar salt etc and most of the first 24 hrs is spent in and out of the hot bathtub struggling to find relief. Although I do have a bit of cramping and feeling of fullness in my pelvic area, I’m okay with just a hot water bottle. I still have nerve pain so will check more into that but o just want to thank you again. I just want to tell everyone with endometriosis to get their B12 checked. They wanted me to take a cancer drug!! Dilaudid. Its my B12!! Thank you <3
Yay! That’s great news Wendy.
Hi – I had been having a lot of issues with endometriosis and pain for about a year. The endometriosis was identified about three years ago when my ob/gyn took an endometrioma out of my abdomen. She was shocked at the time because she hadn’t seen any signs of endometriosis when she performed my csection about five years before that. Separately, about 3 months ago, I asked my primary to test my B12 levels because I have followed a vegan diet for 5 years, and I was having spells where I felt very dizzy and I was having unexplained bruising in places where I didn’t remember getting injured. He did, and although I didn’t get a call back from his office with the results, I looked them up online and found out I was at 235 – on the low side. All of a sudden, unconnected symptoms such as the pins and needles feeling in my fingers and toes, ringing in my ears, bruising, chest pain and fatigue finally made sense. I started taking B12 in pill form (before I had just taken it as part of a multivitamin and in nutritional yeast in food), and I felt so much better – improvement in all of the above symptoms. But the thing that really amazed me was the complete disappearance of pain from endometriosis. I’m not sure if I have any lesions growing inside me, but at least I don’t hurt anymore. I came online to see if anyone else had made linkages with this, and I’m glad I found this blog. I’m wondering if anyone else has found relief from endometriosis pain by taking B12 supplements or getting shots.
That’s great news Amy. I’m glad you found the connection. Much Love.
For all those people that have doctor’s that won’t prescribe them a nutrient panel – please know that there are self testing sites now. One is anylabtestnow . Also, I have had my b12 blood serum tested several times and my results were borderline or normal. It wasn’t until I took a functional nutrient blood test (measuring not just what is floating in my blood – but how my body is utilizing it in my cells) was I diagnosed with a b12 deficiency. These are called cellular micronutrient tests and a popular brand is SpectraCell. These types of nutrient tests are more expensive than the typical blood serum tests, but if the information obtained from the test is helpful it may be less expensive than ongoing care and lack of productivity. Good Luck!
Thank you!! I’ve just discovered at 43 that I have Congenital Pernicious Anemia and the reason I didn’t figure it out 3yrs ago when I first began TTC is that I was already taking high dose B12 and Folate when I tested. I just found out now that I have a homozygous FUT2 gene and am a Non secretor of Gastric Intrinsic Factor. What has me most confused is my low Methylmalonic Acid and low Homocysteine. I wonder if caused by supplementing SAMe or Selenium Methionine as I take both. Could they be clearing the homocysteine? I have hypothyroidism and pernicious anemia but my PA is masked by the high folate and comes and goes on my CBC just into and outside of the healthy range of MCV and RBC. I was recently told I probably have Adenomyosis (bulky vascularized uterus w elevated BCL6 marker and/or endometriosis and I really hope that these intramuscular injections are the key to unlocking my fertility and that it’s not too late. And I hope this comment helps someone else. I watched dozens of videos on pernicious anemia and finally got to one explaining that it could be genetic. Imagine 43yrs without it. Not sure how I survived but I think the sublingual doses is what has helped me feel better this year but also hidden from me the problem. Thanks for the article!