Liverock, I think we really need this info here and this issue has been on my mind for some time regarding the dosage on B12.
In short order the following is what Sally Pacholok, R.N., BSN recommends.
her book is found here: https://www.amazon.com/s/ref=nb_ss_b?...cholok&x=0&y=0
Title:
"Could it Be B12? An Epidemic of Misdiagnosis"
I also want to mention that there are doctors who when confronted with real B12 deficiency will give injections daily, weekly or bimonthly as they feel necessary. It has proven to be nontoxic and safe.
Just incase that website vanishes here is the critical info:
All patients should always have a methylmalonic acid test, along with serum B12 (to aid in diagnosis).
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.
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.
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.
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.