B12 – the vitamin that goes low in many thyroid patients
(Important note: STTM is an information-only site based on what many patients have reported in their treatment. Please work with your doctor. This is not meant to replace that relationship or guidance, and you agree to that by reading this website. See the Disclaimer.)
B12 is a vitamin which has a key role in red blood cell metabolism of your entire body, giving you energy, sharpness in your brain, and healthy nervous system functioning.
Why do I, as a thyroid patient, have a risk of low B12?
Unfortunately, a certain percentage of hypothyroid patients have low levels of this important vitamin. And by what patients have learned, that deficiency is largely due to years of digestive issues such as low stomach acid levels common with hypothyroidism, whether one is either undiagnosed due to the lousy TSH lab test, or undertreated on T4 meds like Synthroid, Levoxyl, Levothyroxine, Eltroxin, etc. Celiac can also lead to low B12 due to the damage it causes. So can the use of the prescription medication Metformin.
Also implicated in lowering B12 can be h. pylori bacteria, the autoimmune Pernicious anemia which attacks parietal cells and intrinsic factor, and patients who are mis-prescribed Proton Pump inhibitors.
What are symptoms of low B12?
Symptoms can vary from person to person, and you can have some, but not all, and yours can be different from someone else’s. But they can include, as reported by patients and see on lists:
• numbness/tingling/pins and needles in your hands, arms, legs or feet (Janie noticed it with her pinky fingers)
• leg pain
• difficulty walking with balance
• weakness in muscles
• poor reflexes
• tongue soreness
• pale in complexion
• feeling of dizziness
• vision problems (blurriness, spots in eyes, etc)
• memory problems/forgetfulness (giving you a wrong diagnosis of dementia or Alzheimers!)
• confusion or brain fog
• difficulty getting pregnant
What do I look for with B12 labwork?
Patient observation has repeatedly shown that just being “in range” is not key!! It’s where the result falls that counts, i.e. they found better health with a lab result in the upper quarter of the range. Mid-range still gave symptoms.
How do I correct low levels of B12?
To correct inadequate levels of B12, patients like using oral B12 supplementation in pill or liquid form (methylcobalamin is the recommended form of B12 for many–see below, but there can be exceptions with an active MTHFR mutation), B12 cream, or injections by your doctor (especially if you have the autoimmune-related pernicious anemia, which is due to a decrease in red blood cells when the body cannot properly absorb vitamin B12). It’s also recommended to increase your consumption of meat and dairy products, which can be rich in B12.
I see different kinds of B12 in the store. Which one?
- The Methylcobalamin version is considered the most active and absorbable, thus the most recommended. It helps lower high homocysteine levels due to a genetic methyl blockage issue like MTHFR. But, some with the MTHFR mutation actively expressing itself may need the Hydroxy version just below.
- The Hydroxycobalamin version of B12 is not natural in your body, but it can convert well to a more useable form of B12 and can last longer in your body. It’s often used for injections. It helps if you’ve had cyanide poisoning from tobacco smoke exposure, as it will bind and remove it..i.e a good detoxer. Many with MTHFR seem to prefer this version.
- The Adenosylcobalamin version of B12 is a natural and active form and stated to be effective against cancer growth. It occurs naturally in foods derived from animals (eggs, meat, dairy, etc). Those with MTHFR have also stated they like this one.
- The Cyanocobalamin version of B12 is inactive and are the most common ones often seen on store vitamin shelves, but it’s the least absorbable, and still needs to be converted to a more usable version in your body (i.e. to the Methyl and Adeno versions above), which if you have a genetic methyl blockage like MTHFR, wouldn’t be your best B12 supplement.
What’s the connection between B12 and B9 (Folate)?
Both B12 and B9 (folate) are needed for good red cell production, and deficiencies in either can cause similar symptoms. So it’s common to see lab testing combine the two. When pregnant, it’s often recommended to supplement with Folic Acid to reduce the risk of miscarriages, say many doctors. Folate is the natural version of folic acid and is often more recommended by knowledgeable people, though, especially if you have the MTHFR gene mutation.
What prescription meds or OTC supplements can inadvertently lower B12?
Stomach acid reducers like Prilosec, as well as lansoprazole, pantoprazole, omeprazole, esomeprazole and raberprazole and others, put you at a higher risk of lowering your B12 levels. (P.S. You may not be making too much stomach acid. You may be making too little–a common condition with hypothyroidism), and which causes acid reflux and the false appearance of too much.
What if I have high B12?
One cause can be liver stress due to your hypothyroid state, meaning it won’t be doing a good job clearing out your excess B12. Or any other stresses can do this! Another very common cause can be the genetic defect in your MTHFR gene. If you have a family history of heart disease, heart attacks, cancers, breast cancers, or strokes, etc, time to look very closely at your MTHFR gene, especially 1298 and 677. See link above. Note that some patients report that if their high B12 is due to the MTHFR gene mutation, they have symptoms of low B12, meaning that B12 is not being broken down for use, i.e. a “functional deficit in B12”, even with a high blood level.
The following stories reveal that low B12 can have some fairly powerful symptoms–some which can mimic low thyroid or an adrenal problem!
Marilyn’s Story: I had a B12 level of 189 five years ago. In the beginning, I tried the mega-doses of B12, but they did nothing for me, and I had to take the monthly shots. My thyroid specialist recommended B12 Dots (found in health food stores or organic sections of stores). Put under your tongue, they are absorbed into the blood stream directly. One a day and I am back to normal. No more shots and no more big pills to take. I use the 500 mcg dot, but I know they also make a 5000 mcg dot.
Jennifer’s Story: When I figured out I was low on B-12 (not by having it tested—it was at normal levels) and started B-12 injections, I was stunned to discover how many of my symptoms, that I thought were due to wrong levels of thyroid meds or HC, were due to B-12. Of course the B-12 deficiency came about due to hypothyroidism causing slowed digestive system, low stomach acid, poor absorption of B-12…so I guess you could say it was a thyroid set of symptoms, yet I “fixed” them, for now, with B-12.
The B-12 relieved free-floating anxiety, quite a bit of the brain fog–the part where my brain just kept “slipping” and going off-line, some of the lack of energy, and some of the difficulty sleeping. ALL of the free-floating anxiety though, which I did not expect at all–I was sure that must be from the adrenals or thyroid stuff. I’ll probably never know if the tingling/numbness in my hands, feet and face were caused by this. Apparently it’s common and it can be permanent. There are so many possible causes of that particular symptom that I just don’t know.
What I learned from reading the book with the annoying title: “Could it Be B-12?” is that neurological symptoms show first and before there’s any indication in the bloodwork. The title’s annoying because when you see it lying around all the time you start talking to yourself and answering the question and posing the question to yourself and everyone else around you. If you get this book be sure to cover it or turn itface down when you leave it or you’re going to hear people asking the question.
At first I did ten days in a row of injections and was ready to be the B-12 poster girl. Then I tried to go to every other day and my brain started slipping immediately and little fingers of anxiety started poking at me again. I went back to every day for awhile, switched from cyanocobalamine to methylcobalimine (supposed to be more easily absorbed and stay in the system longer) and now I’m down to 2X/week without losing gains.
Interesting, eh? The B-12 test I had was the one they use to catch early and mild cases. Nothing.
Meleese’s story: My levels were consistently in the 200-240 range and I had 2 doctors emphatically refuse me injections. I got to the stage where I could barely function, so I saw a “good doc” (listed in the NTH files) when she opened her books to new patients (she only opens them a couple of times a year). She was horrified and taught me to self inject. We can buy hydroxo OTC here in Australia, so at the moment I am injecting about every 3 days. Improvements already are….better sleep, muscle pain has lessened (it was horrendous I could barely use my arms) I can feel my feet again, especially my toes. My balance is improving (although I still use a walking stick). My energy levels/ brain fog are slowly improving. I still can’t read (one of my great loves) but am getting there.
Have you a story to tell of low B12 and successful treatment that could help others? Use the Contact Me for sending your story, and I’ll put it right here. Please keep it short.
** Where can I read more about this? I highly recommend the book Could It Be B12? An Epidemic of Misdiagnoses by Sally Pacholok, R.N. and Jeffrey Stuart, D.O.
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