I've got MS and was admitted for IV steroids to treat an MS episode in early Jan. Was tested for B12 while in hospital. My level was 68 pmol/L!
Neurologist put me on 1 injection/day for 7 days; then 1 injection/week for 4 weeks; then 1 injection/month for 6 months. (injection = Cyanocobalamin). (as at 15Feb18, I've had 3 injections)
My symptoms = constipation, unable to pee, tingly feet, tingling hand, very tired (these started in early Jan18). Maybe more irritable! But I don't know which of those symptoms were due to my MS episode, and which were due to B12 deficiency.
Anyone had such low B12, but symptoms not super-bad?
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Katherine_dT
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Symptoms of B12 deficiency tend to develop slowly and may not be recognised immediately. As the condition worsens, common symptoms include:
Weakness and fatigue
Light-headedness and dizziness
Palpitations and rapid heartbeat
Shortness of breath
A sore tongue that has a red, beefy appearance
Nausea or poor appetite
Weight loss
Diarrhoea
Yellowish tinge to the skin and eyes
If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:
Numbness and tingling in the hands and feet
Difficulty walking
Muscle weakness
Irritability
Memory loss
Dementia
Depression
Psychosis
The "constipation, unable to pee" symptoms you mention may be due to causes other than your B12 deficiency but the list above is by no means comprehensive.
Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:
Vegetarians, vegans and people eating macrobiotic diets.
People aged sixty and over
People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).
People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.
People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.
People with a history of eating disorders (anorexia or bulimia).
People with a history of alcoholism.
People with a family history of pernicious anaemia.
People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).
People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.
People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.
Women with a history of infertility or multiple miscarriages.
Do you see yourself in any of the above people?
It is also important that your Folate level is monitored as this is essential to process the B12.
There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.
Symptoms of a folate deficiency can include:
symptoms related to anaemia
reduced sense of taste
diarrhoea
numbness and tingling in the feet and hands
muscle weakness
depression
Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body and your B12 levels are well below the bottom of the range.
I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.
My ms does complicate things, I think, as there a can be such overlapping symptoms. I might never know if this latest set of symptoms was MS, or b12 deficiency.
My neuro didn't check folate, so I'll ask for that. Vitamin D was just ok, but given the MS he's got me on 50,000iu/week for 6 months.
Weird thing is, I don't fit any of the risk categories, other than I was anorexic for a couple of years as a teen (but I'm 49 now!). This has me perplexed... How did I get down to 68 pmol? Should I be checked for PA?
You could ask to be tested for Intrinsic Factor Antibodies (IFA).
Some people with "traditional P,A." either do not produce Intrinsic Factor or if they do, they also produce an antibody which destroys it and it is then called "Autoimmune Pernicious Anaemia".
In addition it can happen that we produce "Parietal cell Antibodies" and "Intrinsic Factor Antibodies" which totally wipes out any chance of absorbing the B12.
Sadly the IFA test is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have P.A. However, a positive result is a sure-fire, 95% certain indicator of P.A.
As you can see from the above "at elevated risk" list "People with a family history of pernicious anaemia" so it may be worth investigating that possible link to your mother.
A wiser person than I has said:
"Treatment for PA and non-dietary vitamin B12 deficiency is virtually the same.
The symptoms of PA are the symptoms of the B12 deficiency that it causes. If the cause isn't dietary then it is an absorption problem so you need to find another way of replenishing B12 initially. Most absorption problems aren't treatable but a few are - notably h pylori infection - which would mean that once that has been dealt with you would be able to absorb B12 from your diet so wouldn't need maintenance shots for life.
"
As Bluedragon says, here in the U.K. the "injection of choice" by the medical profession is hydroxocobamalin 1mg, however I have been having cyanocobamalin 1mg injections every month for 46 years since 1972. When hydroxocobamalin was introduced in the mid 1980s I had an allergic reaction to it and couldn't last the three months it was "supposed" to last in the system before I had a return of neurological symptoms and so was swapped back to the cyano.
There is a third form called methylcobamalin which again is said by some to be superior to the other two and is also "supposed" to "last" for three months, but at the end of the day it's very much a case of "horses for courses"; the amount of cobamalin !mg in all three is the same and the principle that "one size fits all" is a misnomer as we are all different.
I had a long struggle six years ago to persuade my doctor to change my B12 prescription I'd been on for 40 years from "every four weeks" to read "every three weeks" because of a return of neuropathy in the run up to my next scheduled injection but I succeeded thanks to the help and support of others on the Pernicious Anaemia Society's then forum.
Please remember I am not a medically trained person.
Can I kick in here Katherine. The constipation and increasing inability to pee are definitely one of my red flags which is not included in a lot of the signs/symptoms lists about B12 deficiency lists. I was needing to self catheterize and the constipation was dreadful. These are totally resolved by having my jab (in my case hydroxocobalamin) which I inject every 2 to 3 weeks. I also take an additional magnesium supplement. I will say that the return of my 'flow' took quite some time to resolve and I still take a little longer than most 😊. I know I was lucky to have caught things before they became permanent.
You will get amazing and knowledgeable support here, I'm only able to talk about my experience. Take care.
Thanks again, this is so useful. My bladder function is restored now, and I think that it was caused by my MS episode, as it was just coming right before I started to inject B12. This MS/B12 combo is confusing!
Hi - are you in the UK? I'm puzzled why you are being given cyanocobalamin rather than hydroxylcobalamin. If you are in UK, you should ask to change over - it is a better form to take.
Clive gave good advice re making sure folate should also be taken - 400mcg a day. What is your ferritin and vit D levels? I would take a good B complex. Your levels were really low. A lot of your symptoms may be from the B12 rather than MS - sometimes people are diagnosed with MS and it is a lack of B12 instead! If you look at symptom list you'll probably be able to say - oh yes - especially the stranger ones I found.
Hi! I do believe it can be hereditary as I just found out my 18 yr old son is also low at 132. I was found to be deficient in December 2017 at 114. My mom has ms and I have been begging her to have her levels checked. My cousin and aunt are also deficient and my aunt has a few mental health issues. I am now feeling so much better and have been having cyanocobalamin injections 3 times a week for the last 6 weeks. In the beginning I wasn't being treated often enough and after 3 weeks was finally put on a schedule that worked for me. Here they tend to treat once weekly for a month and then once monthly regardless of symptoms. I was lucky that one doctor listened to me when I told him I wanted to be treated more aggressively as I had neurological and psychological symptoms. I'm in Canada and cyanocobalamin is what is prescribed here. I have found supplementing with folate and low dose iron 4 times a week has made a big difference in how I feel. Be sure to check your iron levels as mine were fine but I found with frequent injections it started to come down a bit and my iron saturation was low as well as my folate level would drop a bit too. I took Clives advice in trying to keep it balanced and that has helped! Good luck to you and hope you are feeling better soon
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