I was diagnosed with B12 deficiency in May 2021, on the basis of low serum B12 (74 ng/L), some loss of sensation in my feet, and nerve conduction assessment in my legs. Due to physician confusion regarding treatment with B12 (cyanocobalamin) injection, I bounced around with injection frequency, with exacerbation of symptoms, until requesting daily injections at the end of August 2021. I have remained on daily injections since then.
I have experienced slow improvement of some symptoms, with slower response by other symptoms. I went through my records recently looking for folate test results, and found I have never had folate levels assessed. I plan to request folate assessment. But it occurs to me that I don’t know what other factors should be monitored, or how often, after starting injection of B12. If other assessments would also be useful, I would like to request them as well. I would appreciate any suggestions.
Here's some background info. I recently had vitamin D tested; the “25-Hydroxy D Total” (D2 +D3) was 44 ng/mL, with optimal levels said to be 20-50, though “patients with bone disease may benefit from higher levels within this range”. The gastroenterology nurse practitioner suggested supplementing, so I began supplementing with D3 cholecalciferol, 25 mcg, 1,000 IU, one softgel per day.
I also take oral B12 (methylcobalamin), 5000 mcg, two per day. I take a “Mature multi” (I am age 72) multivitamin daily. According to the label, for folate it says one tablet includes 833 mcg DFE, which I gather, from Martyn Hooper’s book, is the United States Food and Nutritional Board’s measure of “dietary folate equivalent”. The actual content is 500 mcg folate acid. I began taking expired multivitamins early last summer, and “fresh” multivitamins in November 2021. I am assuming that a folate blood test result will reflect the folate from multivitamin tablets.
I am wondering whether there would be utility in getting levels for methylmalonic acid (MMA), total homocysteine (tHcy), or halotranscobalamin (HoloTC). Would one of these, or something else, provide an indication of what’s going on with B12 within the cells?
Thanks for any help with my questions.
Written by
WiscGuy
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Thank you for your response. I will answer your questions in the order asked.
My diet is not great. In the past I have purchased vegetables, then got a little busy, and when I reached for the vegetables they were spoiled. So my simplistic cooking relies on frozen mixed veggies (peas, green beans, carrots, corn, aka maize), about 80 grams half of the days. Rye bread that I make in the bread machine, so not much folate fortification, made into sandwiches with sausage, or tuna, or burger, etc. Not a lot of variety. I see lots of articles saying I should eat better, but they are general, and when I get to the store I don't know what to buy. Or I have to buy 15 or 20 things for one dish, and use only a small portion of each one, and never use any of it again, and I hate the waste. Etc.
I take the oral methylcobalamin (10,000 mcg per day) hoping to get a bit of passive absorption. My symptoms are primarily neural, and when I read abstracts of articles about studies in nerve regeneration (eg, in diabetic neuropathy and in AKS), most often the form of B12 used is methylcobalamin.
When I first saw a physician regarding feeling crappy all the time, I had started having optic nerve migraines, and had a hypothesis that periodic days in bed might be associated with migraines. I asked the doctor about the hypothesis, he referred me to a neurologist, and the neurologist immediately recognized my symptoms as B12. He ordered B12 blood test and intrinsic factor antibody test, which was negative. A subsequent intrinsic factor antibody test was positive, but a note from the lab said the test might have been affected by B12 injections and suggested ceasing B12 injections in order to get more accurate results. Needless to say, that's not going to happen.
Over the years I have had lots of things going on that I now know can be related to B12 deficiency. Weird heart things. Phlebitis. Obstructive pulmonary disease. Loss of sense of smell. Retina problems. Balance things, including Mal de debarquement, vertigo, proprioception - in short, all the balance things cops screen for when they suspect that a driver is intoxicated. Loss of stamina despite frequent exercise, when stamina would be assumed to be increasing. And other symptoms, all of which seem widely disparate by are linked by B12.
For the balance things I was referred to a balance clinic as a 67-year-old patient who suddenly had a range of balance issues. They noted the issues, said in the report that the problem was central nervous system processing rather than inner ear, etc, but they were stumped as to what was behind the issues. B12 never came up. In a Mayo Clinic (U.S.) center devoted to balance issues. So it's getting to be less surprising that general practice physicians don't have a clue about B12. At least my physician had the ethical standards to tell me right off the bat, as soon as the diagnosis came back from the neurologist, that he knew very little about B12.
Incidentally, I subsequently made an appointment with the neurologist to ask treatment questions. He said his expertise was in diagnosis, and he didn't know anything about treatment, which he left to the general practitioners. I said my doctor had, very ethically, told me he didn't know anything about B12. The neurologist suggested that I propose to my doctor that he ask other physicians for advice. I said my doctor had apparently done that before putting me on an inappropriate treatment regimen intended for blood symptoms rather than nerve symptoms. The neurologist was stumped at that point. I felt a little sorry for him, because it was obvious that he was stuck in a rigidly top-down system that left little wriggle room for independent problem solving.
Subsequently, my doctor offered to refer me to a "B12 specialist", a hematologist. I got about 30 seconds into my questions about B12 nerve treatment and he stopped me, and apologetically told me he didn't know anything about nerve treatment. I suggested (to the Mayo Clinic hematologist) the Mayo Clinic Proceedings article, "The Many Faces of Cobalamin Deficiency." He had apparently not read it yet when he posted his notes, because he mentioned in the notes that he was puzzled why I was unable to be weaned off of B12 injections.
So now you know why I have taken it upon myself to manage my own medical care!
Yes. It all sounds very familiar.I had awful migraines following vertigo.
It was seeing a neurologist firvthd migraines that by chance he was b12 deficient himself.
He needed regular b12 injections abd read every paper there was .
He was astounded how little there was to read.
He said thd ongoing migraines were chronic tension headaches that never went away that went into migraines but also sai there are 26 + different sorts.
I'm left with z vestibular disturbance like you unrelated to ears .
Occipital neuralgia describe slit of my symptoms.
He wax right in thr fact yo keep up regular b12 injections.
Secured a 2 weekly prescription
He also offered propranolol which I didn't take.
He said no quick fix .
So alot if similarities
Time
Time
Pysio
Brain mri ×2 to rule things out.
As fir your food
Make a batch and freeze it in portions .
Nothing gets wasted then.
On a better day
Work on the kitchen a vestibular workout in itself!!
Just keep plodding on .
Hooe you see steady progress.
Mu neuro problems were severe
Were
A long way to go bug have come z long way.
Take care and keep faith of improvements even if at s 🐌 pace
Frozen veg and fruit are fine. They may well be better than fresh if fresh is several days old. Keep a variety in the freezer - lasts forever and no waste 🙂. Get more variety, maybe some frozen Spinach and broccoli, sliced mixed frozen peppers. Anything that adds to variety.
I use the microwave for most frozen veg. Quick and less washing up 😁
Don't forget tinned vegetables and fruit. I always keep tinned butter beans in stock. You can warm them in a saucepan in a little olive oil and seasoning. You can mash them and have on toast, add to pasta dishes etc. Baked beans also good - the reduced sugar and salt variety if they have it. Beans are very nutritious.
Work on ways to get more into your diet. Aim for at least one fruit or veg with every meal including breakfast. A few tomatoes on the side, a banana, anything.
Don't expect to do evening on day 1. Just keep slowly thinking about and your fruit/veg intake will creep up and you'll discover yummy things.
There are other online articles by Sally Pacholok.
Symptoms Diary
You may find it helpful to keep a daily symptoms diary which tracks changes in symptoms over time and if and when any treatment is received.
A symptoms diary could be useful evidence of improvement or deterioration in symptoms to show doctors.
I have written some very detailed replies on the forum which you may find interesting to look at. As I'm in UK, some info I post is specific to UK.
You could search online to see if there are any regional guidelines on treatment/diagnosis of PA and B12 deficiency and folate deficiency in your state. I am not aware of any national guidelines in USA but might be worth a search online.
I did find this link to a US article on B12 deficiency.
MMA and homocysteine are the tests for functional B12 deficiency - high serum B12 but not enough getting through to your cells.If you have PA then that can affect the absorption of other micronutrients, particularly folate and iron. Vitamin D is a frequent deficiency outside the tropics because of lack of sunshine. This is made worse by changes in the skin as you get older meaning less sunlight is absorbed anyway.
There is nothing wrong in using frozen fruit and veg - the freezing can mean that the vitamin and micronutrient content is better preserved than in 'fresh' veg.
OK, There are a couple tests that come to mind and all are blood serum tests. MMA, Homocysteine, Parietal Cell Antibody (PCA) , and Gastrin serum test,
You may want to stop the B12 supplementation and have the IFA test done again in concert with the PCA. Usually these are done together here in the US. IFA is much less accurate and if you test positive for PCA (90% of those with PA are positive with this test) and negative for IFA it is still considered a diagnosis for PA. If you have either of these tests you should stop supplementing with B12 for one week prior to your blood draw. see Labcorp patient prep for IFA test:
MMA and Homocysteine you will need to have periodically these show how well your body is converting and utilizing B12.
Gastrin serum test measures the amount of gastrin in your blood. You may only need this once after you've been diagnosed with PA. This test will just confirm along with PA how far advanced your gastritis is and if you are producing enough stomach acid to turn off the Gastrin producing G-cells in the lower third of your stomach. With PA that stomach acid - gastrin feedback loop is broken. If serum levels are very high then you have little to no stomach acid and may need to consider supplementing with HCL and digestive enzymes. I have been tested for both stomach acid (my PH was 6 or almost zero stomach acid) and my serum gastrin confirmed that with a reading that was over 1,000 pg/mL with the high normal range supposed to be 115 pg/mL.
Of course take all this info to your doctor and consult with them. Understand MDs in the U.S. from what I understand receive about 30 minutes of training on B12 deficiency during their medical school. So in the US look up an MD who practices functional or holistic medicine they are more apt to be training in nutrition or a Naturopathic Medicine Doctor ND. I am now using both with much more success. Only drawback is they do not accept insurance.
Now on to frozen foods and microwaves. During my research I discovered actually maybe stubbed my toe on some reports and websites indicating that two things are not so good for vitamin B12 in foods. The first is microwaving food destroys much of the B12 vitamin. The second is beef and poultry raised in cattle yards/feedlots and chickens in cages. These animals are so closely held that they require antibiotics. This too destroys animal born vitamin B12.
Even though I am unable to absorb B12 still only Steam Vegetables and purchase only range grass fed beef and poultry.
Here is an article on “Preserving Nutrients in Your Cooking”
Hello! My doctor ordered a MMA test for me after I started injections. My MMA was low which is exactly what she wanted to see—that my body was able to properly utilize the b12 that was being injected.
I had a borderline vitamin D deficiency years ago—about 30. My GP was okay with that level but my allergist was not and prescribed an rx 50,000 units and I have been on a maintenance dose of 5,000 units a day for about 10 years which keeps my levels in the 60’s. It took a few years to raise my vitamin D in that range. From my experience, it takes large doses and a lot of time to raise D levels.
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Help please!! 
Injection frequency for Vitamin B12
How much folate for how long?
Upset stomach due to b12 and folate
1st B12 Injection
