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Pernicious Anaemia Society
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Normal B12 test - could I have a deficiency?

Hi

I'm a 48 year old male and until recently I was in excellent health, but I've been suffering from several neurological type symptoms since April 2017, which have generally come and gone with one or two worsening, someone in another forum suggested that I might be suffering from a vitamin B12 deficiency. This is a list of the symptoms I've experienced at one time or another:

Balance problems

(not vertigo, but feeling off balance, no falls yet but definitely getting worse)

Tinnitus (constant since Oct 2017, not loud but gets louder if I stick my jaw out)

Tiredness/fatigue

Tingling/pins and needles

Stinging

Twitches

Jerks

Itching

MCI

Altered mood (minor)

Scalloped tongue

Difficulty opening eyelids after sleep

Heat regulation

Ear “fullness”

Stabbing pains

Lower back pain

Upper back/neck pain

Buzzing sensation

Cramps

Bloodshot/sore eyes

Mild sight problems

As far as I can see, all or almost all of these can be caused by a vitamin B12 deficiency, but when I mentioned this to my GP he thought it unlikely as I had a serum test done in April 2017 (just after the symptoms started) and it came back with a level of 660, which is high normal as far as I understand.

I saw a neurologist in December, who diagnosed a functional disorder, but from what I've read, most people with functional disorders don't display all the symptoms that I've had.

A subsequent MRI scan in January showed nothing abnormal, only some neck wear and tear.

In my "googling" I have yet to come across another condition that would explain all these symptoms. Any thoughts or feedback would be most welcome.

Many thanks

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Hi somerandomperson

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, or infections such as h-pylori 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" among any of the above people?

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

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Many thanks for your reply, clivealive. I don't think I fit into any of those categories, and my test wasn't even in the "grey area" as far as I understand it, but it's just my symptoms seem like pretty much an exact match.

Best wishes

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Because the serum B12 test is not that reliable The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

google.co.uk/url?sa=t&rct=j...

You might like to point this out to your doctor.

Have you had your Vitamin D tested?

Lower level Vitamin D deficiency can lead to a number of non-specific symptoms, including possibly chronic fatigue (experts have for many years noted an association between sufferers of chronic fatigue syndrome or myalgic encephalitis (CFS or ME) and low blood levels of Vitamin D).

It has been estimated that between 50-70% of people living in the northern Europe (where daylight length reduces your chances of receiving adequate sunlight in the winter) are deficient in this vitamin by March each year.

Symptoms of vitamin D deficiency include chronic pain, weak bones, frequent infections (recent research has detected an association between vitamin D deficiency and severe pneumonia), depression and fatigue.

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When I developed peripheral neuropathy and other neurological symptoms in 2005 the several neurologists I saw, both privately and in a neuromuscular clinic in a big teaching hospital, could not find a cause. The single total serum B12 test done by my GP was also high in the normal range. While there is no definitive test for B12 deficiency, the best single indication is abnormally high methylmalonic acid (MMA). These studies

ncbi.nlm.nih.gov/pubmed/162...

ncbi.nlm.nih.gov/pubmed/208...

both found that, using MMA as a reference, total serum B12 is a very poor indicator of B12 deficiency, particularly in subjects with neuropsychiatric disorders.

After reading the Herrmann study, I started taking 3 - 5 mg B12 orally and my neurological symptoms slowly cleared up, much to the surprise of the neurologists.

I do not suggest you start self treating with oral B12.

b12-institute.nl/caution-no...

Your next step should be to request MMA and homocysteine tests. These levels are increased by B12 deficiency. Also make sure your folate is in the upper part of the normal range. If you can't get MMA and HCY tests then push for B12 injections as suggested by Clivealive.

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Many thanks for taking the time to reply Martin_12, I really do appreciate it. That's very interesting - thanks for the advice. Just out of interest, were your symptoms similar to mine?

Kind regards

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I am a recreational cyclist. My symptoms were peripheral neuropathy (hot, burning feet, tingling calves and hands) initially only after a bike ride, then continuously. The tingling and burning progressed up my legs and hands, and I developed proprioception issues, cardiac arrhythmias and some memory problems.

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Thanks again for your reply, Martin_12. I'm sorry to hear about your symptoms but I really appreciate you taking the time to reply.

Best wishes

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Good advice from others here.

The serum B12 test is flawed for many reasons (Martyn Hooper's latest book, 'What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency') has more detail on this.

You could try writing or emailing your GP with latest BMJ research document summary only below (full document behind a paywall but GP may be able to access). It gives details on the complexity of diagnosing PA/B12 deficiency as well as the importance of treating symptoms to avoid permanent neurological damage, even though serum test is within range.

bmj.com/content/349/bmj.g5226

pernicious-anaemia-society....

The Dutch links on the r/h side of this forum explain more about testing, B12 misconceptions and the importance of early and adequate treatment. It might also be a good idea to join the PAS - they have leaflets for professionals and may be of support in getting diagnosis and correct treatment.

Many of us on the forum self inject if you eventually decide this is the best course.

stichtingb12tekort.nl/weten...

..........

Two experts in the field, Sally Pacholok, "Could it Be B12?" and Dr Joseph Chandy, have been studying vitamin B12 deficiency for years and both describe how under diagnosis is causing severe and permanent neurological/psychological damage if not treated early and adequately.

Good luck for early diagnosis and treatment.

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I've just had a look at the links you posted, and found the one titled "B12 deficiency may be more difficult to detect in people who exercise regularly" particularly interesting because in the months leading up to my initial physical symptoms I had been training very hard (2+ hours per day on average) for a cycle race. Thank you - I will mention it to my GP.

Kind regards

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It's interesting you say that, hadn't picked up on that myself. My active B12 results suggest normal, but I've been having many of the symptoms and my prvt GP wants to treat from tomorrow with B12 injections. I also (until recently) exercised a lot - 100k or more a week steps + 3 5k runs. I'll keep this in mind.

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I'm an endurance swimmer and I'm in the same boat as you and Martin. I posted earlier this spring about B12 and it's link to exercise and Martin was kind enough to answer with some links, probably similar to the ones you just read. I almost feel like endurance athletes need to be on the B12 def. list of "do you see yourself fitting in this scenario". There is definitely a lack of knowledge about the connection though. But I know it's connected as when I stopped exercising this summer due to a broken elbow, my symptoms improved (not all the way, but were better). Anyways, I started with mainly vertigo issues two years ago, and also weight and hair loss & my MCV's were a little big & blood cell %s a little off, and I would have tingling in my feet just when I first walked out of bed.

I didn't get a clear baseline as I started B vitamins before testing, but only tested near the upper end of low for B12 last Dec. My homocysteine & folate have always tested okay too, but I have similar symptoms to you and yes, nothing else seems to fit the symptoms like B12 deficiency. I was lucky? in that my mom has neuropathy (caused by B12 def.), so that is what ultimately got my GP to test for B12. My advice is to get all your tests done before you try taking B12 though as once you start it messes up your results and could leave you with extra questions! Fight for the MMA as others advised too. I had to print off articles from here and bring them to my GP, but then he agreed it was the better test. You can also do it privately, but would be very expensive that way! Good luck!

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Hi someranddomperson DaveT81 , kngswim

Interesting that you've made the connection between B12 and exercise. Do you have a link to this? I'm particularly interested in this connection and can't find it!

The book, "Vitamin B12 Deficiency and Chronic Illness". has a whole chapter on B12, Neurological Injury and Exercise", making connections with MND, Parkinson's, etc.

MND (called ALS in US) is treated with very high doses by B12 injection in US and is extending lives. ALS is named after a well known baseball player, Lou Gehrig, who died of the disease at the top of his game. Roger Bannister lived to a good age but had Parkinson's when he died this year.

.

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It's this link that Martin posted

ncbi.nlm.nih.gov/pubmed/162...

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Thank you 🤗

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Or better still, the full report...

pdfs.semanticscholar.org/f4...

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Thank you so much for your reply, Polaris. I have also noticed several behavioral changes in myself, especially in the last year or so, which I've largely ignored as I simply put them down to being a consequence of worrying about the physical symptoms I was having, but reading about symptoms and stories of sufferers of frontotemporal dementia, so much of it sounds exactly like what I have experienced myself. These include apathy, withdrawal, mild cognitive impairment, irritability, increased sex drive and impulsiveness. I now highly suspect that I am suffering from FTD. Unfortunately my neurologist seems to have decided that I have a functional neurological disorder, so it might not be that easy to make any progress in terms of a clinical diagnosis.

Best wishes

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i imagine this must be very difficult to deal with....

Severe B12deficiency untreated, you may already know, also leads to neuro/psychiatric damage, e.g. dementia, vasculitis, psychosis, hallucinations, etc. This happened to my sister (vegetarian with allergies) - misdiagnosed for years with ME (at one time in a wheelchair), then eventually dementia and all the above symptoms.

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Really sorry to hear about your sister. I'm taking the view that it can't hurt to try it, no matter what my blood test says, and it could help a great deal.

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Hello

I have many of the symptoms you mentioned and others as well. My B12 was 462 after a couple of days of oral supplements, my MMA was normal. I did a NutraEval which showed low Magnesium, B1, a need for Pancreatic enzymes and Probiotics.

I have been doing SI every other day since April of 2018. I have not seen improvements in my neurological symptoms yet. I haven’t heard others mention neck pain and lower back pain in association with B12 deficiency, but I have both. I have an appointment next week at the Mayo Clinic in Arizona and am so hoping for a diagnosis. Best wishes to you for a resolution to your issues.

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Thank you very much for taking the time to reply, Sita505USA. Do you have balance issues too? If so, how would you describe them? I would like to also wish you all the best in finding answers and a resolution.

Kind regards

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Hi

Yes, I have terrible balance issues and at times have had pressure in my head and neck.

My vision problems are very scary to me, as well as the leg weakness and a myriad of other symptoms. I have had many, many blood tests, MRIs, etc. I am very frustrated with doctors but realize that they are doing their best. I am also aware that I am very impatient and irritable as part of this...

I am so hoping for a simple solution for both of us and all individuals whose lives have been turned upside down by these conditions!

Best regards,

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Sorry, this is a PS, my balance issues are almost vertigo related, I will be moving, turning, etc. and have to catch myself from starting to fall. It almost feels like it comes from a shifting of fluid, pressure in my brain. Sorry, one of the things I am dealing with is cognitive slowness, brain fog. The symptoms are so diverse that I have trouble describing them. I hope this makes some sense.

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Sorry to put myself in the middle of your convo with somerandomperson but I had to let you know that your 'head' issues sound very similar to mine.

I've just recently started with the vertigo, as in.. Friday but the pressure and fullness in my head, the blurry and affected vision sounds like me. I know What you mean about the 'fluid' feeling. Had so many issues describing the feeling, but its lasted 24 hours a day, 7 days a week since last May. Out of all of my symptoms it's probably the worst one. The feeling sort of.. envloped my brain, like a wave of liquid whilst sitting in work one day and it's been there ever since. The balance issues have been slight but not crippling, until the vertigo kicked in last Friday.

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That's very interesting. I'll try to describe my balance issues as best I can:

Initially I would feel a bit off-balance, almost always when standing still. It would be like I was on a boat that was rocking slightly, or of being slightly drunk. I would not wobble or sway, but I would still feel like putting my hand on a table or leaning against something for support. In the beginning if I tried doing a Romberg test at home or at my GP's clinic I would breeze through it easily. I would sometimes be hit by a momentarily "wave" and feel unbalanced, for a fraction of a second, but this would only happen now and again, less than once a day.

Lately, however, my balance issues have definitely progressed. Now I feel much more off-balance and am unable to stand up for any length of time. I constantly look for something to lean against or a chair to sit on, the "waves" are much more frequent (several times a day) and I also sometimes feel off-balance when seated (last week I almost fell off a stool) or even when lying down (I find myself having difficulty getting into comfortably balanced position when lying in bed and occasionally feel like I am going to fall out if I'm close to the edge.) How much of this recent progression can be attributed to the flaring up of my back pain I don't know.

I'd be very interested to hear how this compares to your experiences.

Kind regards

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Dave, Somerandomperson, and everyone else kind enough to respond. I feel like the more input and information we can share, the better!

I have had several stomach surgeries and taken PPIs, so I consider absorption to be a factor for me. I tested low for B1 in June if this year (2018) and began supplementing with B1 at that point. My last reading was normal, but I continue to supplement. I found it interesting that B1 deficiency symptoms were similar to B12 deficiency symptoms and included shortness of breath, which was my first symptom after my last stomach surgery. I would encourage folks to look at B1 levels/symptoms as well. The human body is a very synergistic system with many many elements that can cause others to become unbalanced.

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Hi Somerandomperson

I am hoping you got the reply I posted yesterday.

Best, Sita

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Yes, I did, thank you. That's very interesting. I will definitely be pushing my GP and neurologist to explore these possibilities.

Kind regards

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