Vitamin B12 deficiency is commonly misdiagnosed.

[Sally Pacholok, R.N., BSN]

I diagnosed myself at the age of 21 with vitamin B12 deficiency. The only sign I had was enlarged red blood cells, no anemia. I am now 43 and have been an ER R.N. for 20 years and have also been researching vitamin B12 deficiency and pernicious anemia for 20 years. I frequently encounter patients who have signs and symptoms or are at high-risk for B12 deficiency, but doctors do not test. The one's that rarely do--- are not ordering a more sensitive test than the serum B12 test. All patients should always have a methylmalonic acid test, along with serum B12 (to aid in diagnosis). Out of frustration, witnessing patients who needed to be tested, and teaching doctors how to diagnose B12 deficiency, I co-authored the book, "Could It Be B12? An Epidemic of Misdiangoses," Quill Driver Books, 2005. 12 reviews on Amazon.com (3 from physicians). Many disorders or diseases don't have a treatment--- but B12 deficiency does. It is criminal for patients to sustain neurologic injury or permanent disability because health care professionals are not educated properly on B12 deficiency. This is a totally preventable and treatable disorder. My mission is to get a standard of care change in the early diagnosis of B12 deficiency to prevent poor health, injury, disability, poor outcomes and even death. Major malpractice cases have been won by patients who are permanently injured.
All seniors who fall should always have B12 deficiency ruled out with methylmalonic acid testing. B12 deficiency can cause gait and balance problems, tremor, orthostatic hypotension, parasthesias, confusion, dementia--- which makes a patient high risk for falling----- yet there is no standard of care to check seniors for B12 deficiency when they present with a fall. This is currently a project I am working on. I have seen many patients who have fractured their hip or femur--- who proved to have true B12 deficiency. We are wasting billions of dollars and more importantly affecting millions of lives being ignorant regarding this disorder.
Recent article I wrote for "Nursing 2007" January issue regarding B12 deficiency and the elderly. In addition, anyone with beginning dementia or with a diagnosis of dementia needs proper screening to rule out B12 deficiency. There is a critical window of opportunity to treat B12 deficiency or permanent injury will result.

[Unregistered]

I read your article in Nursing 2007 and found it to be very informative. If the B12 deficiency is caused by malabsorption would a person need b12 injection or would a p.o. or sublingal take care of the problem. I know with pa you have to take inj. due to the lack of the intrinic factor, but if it's not caused by pa would the p.o. provide the b12 we need ? I find that sublingal b12 helps with my burning feet.

[Sally Pacholok, R.N., BSN]

Anyone with neurological injury or signs or symptoms regardless of the reason they have a B12 deficiency (ie. pernicious anemia, celiac disease, gastric bypass, chronic proton-pump inhibitor use, etc) should receive a series of injections to replace ones stores. Typical series is 1,000 mcg every day x 5-7 days, then once a week for 4 weeks, then once a month for life. Some people need the injections twice a month for life. I recommend hydroxocobalamin injections over cyanocobalamin. People can take high dose SL B12 inbetween injections 5,000 mcg methylcobalamin.
I always can tell the difference when I get a shot verses taking the high-dose sublingul B12 and I have heard this from a variety of people that have B12 deficiency from different reasons--- and it is not that we like getting shots. The literature states that regardless of the reason you have a B12 deficiency (including PA) --- that high dose B12 is enough and injections are not necessary. There are not enough studies out there to convince me. I prefer to get the injections and take SL B12 inbetween. I know that autistic children respond greatly to injections of methylcobalamin and hydroxocobalamin verses taking high dose liquid B12.
If you find that it is helping your feet--- continue taking the SL. If you can get a doctor to write you a prescription for hydroxocoblamin get the series of injections-- taper off --- but still take your SL B12.
I encourage you to read our book--- which talks about inborn errors of B12 metabolism and autistic children/developmental delay, use of nitrous oxide, B12 deficiency and the elderly, B12 def. and children, neurological diseases, B12 def. and mental illness, B12 deficiency and cardiovascular disease related to hyperhomocystinemia, infertility, and a chapter for physicians and other health care professionals--- which is easy to read for lay people.

[Unregistered]

my best friend and I both have read your book,she is suffering so badly.It all started in Feb.2006 she woke up with a weird feeling in her head.But it soon progressed to a dizzy feeling.She went to an ent because she thought it was
her ear.Tubes later no help,they told her to live with it,they couldn't help.So she went to many nurologists first they said she had m.a.v. migraine associated vertigo. She got no better,went to a tmj guy,he almost killed her. She carried on like a trooper, until the terrible fatigue came on, just a few days,then a few more days,and now it is everyday non-stop! Then if that was not bad enough she now has debilatating muscle aches in her hips,thighs,calfs,and even her toes. She is also suffering from a cold numb feeling in her calfs. She has gone to a vasscular DR. nothing, nurologist,nothing. She has been to countless E.R.hospitals,therapists,yes she even thought maybe it was stress causing all these symptoms. Finally one Dr. suggested to do a b12 serum test, the test came back she was low 220. Finally something showed to abnormal, so the suggested her reciving b12 injections. She began the injections right away, but unfortunatly no one including her Dr. informed her about the potassium depletion that can occur. She had to find that out by reading your book. We had a question,when she went in for the potassium they took a b12 serum again and only after 2 injections it showed up a 1266. Is this normal? how can that be so high after only 2 injections? We are struggling with alot of questions, no Dr.'s she has been to know anything about b12 defficeny. They keep telling her it is stress,that is crazy.She needs help could you give us some insight,she has all the symptoms in your book, but no one will take her seriously . She has a little boy who needs his mother back.


Thank you
friend despretly trying to save her
best friend.

[Sally Pacholok, R.N., BSN]

Once you get an injection, yes the serum B12 will be high--- that is normal----- but, your friend needs to get a series of injections to replace her body stores. A common mistake is for the doctor to retest her serum B12 after they give an injection or two--- which when it comes back high---they think they don't need anymore, or will only give you a shot once a month--- 2 shots is not replacing body stores. Hopefully her doctor not only checked her B12 but did a MMA test and homocysteine test---which would help prove if she had a severe deficiency. A serum B12 of 200 is low-- and she needs treatment. Now that she received 2 injections, the MMA is pointless. The typical protocal for B12 injections is 1mg every day or every other day x 5 to 7 times, then once a week for 4 weeks; then once a month for life. She also should take the injectable for hydroxocobalamin verses cyanocobalamin. Also, she should buy methylcobalamin 5mg which equals 5,000mcg sold as lozenges (a reputable company is Jarrow) www.jarrow.com and take them daily. She should keep a diary of how she is feeling. Certainly her signs and symptoms sound like B12 deficiency and she did have a reported low B12 of 200. Yes, B12 deficiency can cause dizziness and doctors can mistake it for vertigo. She should also look into if she received any nitrous oxide which would use up her B12 stores (dental or other surgery).
Regarding the potassium--- this typically only happens when patients are severely B12 deficient---- where they have been misdiagnosed for a long period and they are severely anemic and are getting daily injections. Two shots should not have depleted her potassium.
Your friend may have a B12 deficiency---- but she may have something else going on with it. They should check her thyroid and iron stores using the test (ferritin) for a thyroid disorder and iron deficiency. She should also see a neurologist to rule out MS. But, she must take the daily high dose methylcobalamin and try to get some more shots. She should record her response. Do not worry what the serum B12 is ----now that she had injections or will be taking B12 lozenges--- because now it is irrelevant. This is why it is so important to get tested first before people start taking high dose oral B12 on their own, because they will screw up the tests--- and then their doctors will think B12 is not the problem and they will continue to get misdiagnosed or think their patient is nuts. I know in her case she did not do this, but thank goodness some doctor at least did a serum B12--- but he/she should of done the MMA and Hcy after the B12 came back low. No harm done--- now she needs to get more B12--- and should also follow up with a doctor to make sure nothing else is going on, like MS. But it sounds like she made the rounds to many doctors---and got no where. Her case is typical where many doctors ignored checking her B12 status when they really have a problem, then when they can't find anything wrong, they think the patient has a psychiatric problem (which as you know--B12 deficiency also causes). Good luck.

[unregistered]

I just read this string, and find it fascinating b/c I was diagnosed with many things incorrectly and finally MILD B-12 deficiency. I say MILD in caps b/c the symptoms haven't been so mild. My symptoms began 1 1/2 years ago with cramping in my quads. Inexplicable ... caused by mild exertion. After months of physical therapy the symptoms improved, then recurred. Then, tingling began in the front of my legs (shins) and across the tops of my feet. Then feet/ankles felt like they were sprained. Podiatrists gave me cortisone shots. When I started to get nerve pain in my feet (last summer) I was finally sent to a neurologist. After a few months of messing around with that, my primary doctor ordered an MMA test which was high. Last November I started B-12 shots every 3 weeks. Immediately, my symptoms got better and worse. The ankle pain started to improve, but the neurological symptoms ran up my body like a vine. Twitching, tingling, cramping, etc. Each time I got a shot, the symptoms were MUCH better (85%), but would return within a couple of days. My lost shot, I started to add oral Methylcobalamin 2000 mg/day. By last December I had developed stomach problems too. Unable to eat certian thing, burping, etc. and cognitively I was really getting confused and couldn't concentrate (yes, this was part of the worsening.) Cognitively, I'm fine now. Since I added the oral B-12, the stomach issues have completely resolved. But, the tingling, twitching, pain (in my left ear) remain. My neuro says it doesn't look I have spinal column damage. Is all this mess reversible? Will your book give me guidance too? Thanks for the reply. Meg

[Sally Pacholok, R.N., BSN]

Yes, the book will give you an excellent understanding of B12 deficiency and how it affects numerous body systems, how to treat, stories of misdiagnosis, B12 deficiency and mental illness, B12 deficiency and cardiovascular disease causing increased homocysteine (which is worse than elevated cholesterol), how it affects elderly sometimes misdiagnosed as Alzheimer's, dementia, falling (which causes hip fractures), how it affects children causing autistic symptoms, how everyone with MS needs it ruled out, how it can affect one's fertitlity, how laughing gas (nitrous oxide) depletes ones B12 stores, how to talk to your doctor, and a B12 deficiency critieria list, B12 deficiency risk score, 22 quick reference tables, cost-effectiveness, etc.

One thing is you should get hydroxocobalamin injections verses cyanocobalamin (physician can write for this by writing D.A.W on the Rx--- which means drug as written). You need to get a series of injections (hopefully you already got), and if you have any neurologic injury (which sounds like you do)--- you should be getting more frequent injections. Taking the methyl-B12 2,000 mcg lozenges daily is an excellent course of action, (and keep doing this--even though you are getting injections), but I would still get weekly injections until your signs and symptoms really improve (or level off--- which is typically 6 months to 1 year after treatment begins).
Since you are having stomach problems, you need to have further tests (which you needed regardless anyway). You need to have a endoscopy of your stomach (EGD) where they can see if you have chronic atrophic gastritis, they should biopsy it, and also check for H. pylori, will also biopsy for cancer. Your doctor should do a biopsy of your intestine--- to make sure you do not have celiac disease which is a allergy to gluten--- which can cause B12 deficiency as well as other nutrients such as iron deficiency.
Your doctor needs to do blood work for celiac disease for antibodies and should also check your serum gastrin level---- which is elevated in people with autoimmune pernicious anemia. Parietal cell antibody and intrinsic factor antibody blood test is also used to help diagnose autoimmune pernicious anemia.

[Unregistered]

thanks for the reply! I'll get the book from Amazon today. My neurologist already checked for celiac sprue antibody and I was negative. I have had lots of blood tests, the only abnormality was elevated MMA and MCV (blood cell volume.) I have been getting 1000 Mg every 3 weeks since November. Within 20 minutes of getting them, I'm much better, but the symptoms come back within 24 days and back to previous level within 3 days. So, I added the 2000 mg daily of my own volition. My Ferritin level is normal, no iron issues. Homocysteine was just checked, also okay. I have tried to get my primary to give me shots more frequently and I have gotten an emphatic NO. Getting my next shot on monday (cycanocobalimine, not what you mentioned) and meet with my neuro again on the 19th to review my recent blood results. I'll share with him your regimen for shots and see if he'll overrride my primary.

The repair process is a little scary. Seems like everything gets worse, or different. Instead of twitching in a spot, there's numbness, instead of tingling, there's pain. The good news is that since December, I have not had any new symptoms, so the damage seems to have leveled off.

thanks so much for your reply. Meg

[Sally Pacholok, R.N., BSN]

Yes, you had a vitamin B12 deficiency that went on for some time to get neurologic signs and symptoms. Elevated methylmalonic acid (MMA) in the blood or urine means you have vitamin B12 deficiency. Could be you have autoimmune pernicious anemia. You are lucky that you had an elevated mean corpuscluar volume (MCV) or your red blood cells--- because it finally gave one of your doctors to check for vitamin B12 deficiency. This is a common error--- doctors think that people have to have an elevated MCV and anemia to think B12 deficiency, but that is a mistake, because at least 1/3 of patients exhibit neurologic manifestations well before MCV elevation or anemia presents. This is extremely important for physicians to get reeducated because if the B12 deficiency goes undetected or untreated for too long, there may be permanent neurologic injury. Your neurologic injury will not progress--- once you get treatment you will either be the way you are now--- or you can improve. After 6 months to 1 year of aggressive treatment--- you basically will be where you are at. It depends how long you were deficient, some people get total reversal of symptoms, and others get 25%, 50%, 75% improvement, and yet others get no improvement. There are people that have been misdiagnosed that are permanently crippled in wheelchairs or use specialized crutches to ambulate. Others it affects their mentation, and some have permanent cognitive problems--- others dementia.
You should ask your doctor to prescribe you a 30ml vial of Hydroxocobalamin and have them teach you to self inject (just as diabetics learn) you too can learn how to give yourself a shot--- or have a family member learn. Maybe this is why they won't give them more frequent to you. The B12 lozenges you are taking make sure they are methylcobalamin (this form the body does not have to convert) and I would take 5,000 mcg 12 hours apart--- and see if this helps. You stated you were diagnosed in November, so you are 4 months into therapy--- you are trying to reverse as much damage as possible.

Remember, if you are left with any lasting signs and symptoms---- you have a malpractice case. B12 deficiency should never get to the state of causing permanent injury or chronic paresthesias or pain. You will learn this from the book. If you were going to a doctor complaining of these symptoms and no one checked you, they are liable. If you were high risk for B12 deficiency for a variety of reasons and no one checked you (meaning ordering appropriate blood work--- B12, MMA, homocysteine, gastrin--- for a start) they are liable. This is why we wrote the book, to prevent poor health, injury, disability, nursing home placement, and even death. America's medical community must wake up regarding this disorder. It has been written about for over a century--- but somehow they have forgotten this easily diagnosed and easily treated disorder. In fact, in 1934 Minot, Murphy, and Whipple shared the Nobel Prize in Medicine regarding the discovery of vitamin B12 as a cure. It was also called pernicious anemia (meaning deadly anemia) because there was no cure and people died from this. The average person wouldn't think a little vitamin could kill you---- but it can.

By the way, your homocysteine (Hcy) will be normal once you start receiving treatment (so ordering a Hcy after having B12 injections is useless) your Hcy should be normal now--- and it is as you stated. Hcy can be elevated for untreated thyroid disorder, renal insufficiency or failure, vitamin B6 deficiency, vitamin B12 deficiency, or folic acid deficiency. MMA elevation is specific for B12 deficiency and not the other B vitamins.

You are another testimonial as to how B12 deficiency is commonly overlooked and undiagnosed causing neurologic injury. Hopefully in your case it will be reversable. All diabetics diagnosed with diabetic neuropathy must have MMA and Hcy testing along with the serum B12--- always as a series of tests together to aid in early diagnosis. Many diabetics have an undiagnosed B12 deficiency which their doctors just ASSUME that the neuropathy is caused by their diabetes. The only way to know for sure is to test their patients.

[Unregistered]

Based on my neuro exams, the neuro thinks this is reversible, as does my primary. The paresthesia in the feet started last June (2006) and treatment begand in November 2006. I think the quad cramping is related but this is an unusual neurological symptom (if it was a symptom at all.) I am very hopeful it's reversible.

Hindsight is 20/20. I'm tall and thin. I am a recovered bulimic. For the past couple of years, I had a couple of glasses of wine each night. In the past couple of years, I had a number of relapse bulimic episodes. I saw from your literature that bulimia predisposes someone to B12 deficiency. Makes sense now! I think the combo of alcohol and bulimia is probably a pretty high risk situation. Ah well, wish I knew then what I know now.