Is my B12 too low?: Hi, I recently had... - Pernicious Anaemi...

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Is my B12 too low?

Mamabear52 profile image
16 Replies

Hi, I recently had my B12 tested as I feel tired all the time, it came back as 320 ng/l which my doctor said was within the normal range but I seem to have a lot of the symptoms listed under B12 deficiency. Should I start taking a supplement?

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Mamabear52
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16 Replies
fbirder profile image
fbirder

It can't hurt to try. If it makes you feel better then you can report that back to your doc. Don't let them do any more B12 blood tests though, as they'll be high from the supplementation.

You have many choices - sublingual spray, sublingual lozenges and skin patches have all had positive results for some people. Most are available from Amazon.

Mamabear52 profile image
Mamabear52 in reply to fbirder

Thanks, I just bought Betteryou B12 spray so I will see how it goes.

wedgewood profile image
wedgewood

I would definitely start taking a supplement. Patients with 500ng/l and under in Japan and Germany are treated . It is not possible to overdose with B12(there are scientific documents stating this) so even if the lack of B12 is not the reason for your symptoms , you will have done yourself no harm, and may well see your stmptoms fade away! Don't forget that you must take plenty so folic acid (B9) as these vitamins work together Of course as soon as you start supplementing, your B12 reading will go high.

Mamabear52 profile image
Mamabear52 in reply to wedgewood

Hi, my folate level was 6.6 ug/l so would I need to take that too?

Sleepybunny profile image
Sleepybunny

One thing I would say is that supplementing with b12 can make it difficult to get a diagnosis of B12 deficiency.

b12deficiency.info/b12-test...

b12deficiency.info/what-to-...

B12 Symptoms Lists

b12deficiency.info/signs-an...

pernicious-anaemia-society.... See Symptoms checklist

I have read that it is possible to have severe B12 deficiency with results that are within normal range.

UK B12 documents make it clear that peopel who are symptomatic for B12 deficiency should be treated even if B12 blood levels are normal range. See below links.

ukneqas-haematinics.org.uk/...

bmj.com/content/349/bmj.g5226

Google "BCSH Cobalamin and Folate Guidelines"

UK B12 websites

pernicious-anaemia-society.... 01656 769 717

b12deficiency.info/

b12d.org

martynhooper.com/

B12 books

What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper

Could it be B12?: An Epidemic of Misdiagnoses by Sally pacholok and JJ. Stuart

Uk B12 treatment

patient.info/doctor/pernici... See Management section

BCSH Cobalamin Guidelines page 8

clivealive profile image
clivealiveForum Support

Hello Mamabear52 and welcome to this community.

I am not a medically trained person and there are others on here that will have given excellent advice but I'd like to "get to the bottom" of why your B12 levels are low.

Can you "identify" yourself with any on the following list?

Anyone at any age, can become B12 deficient. Thus you need to be tested immediately if you develop the symptoms described in this chapter. 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.

Infants born to and/or breast fed by women who are symptomatic or are at risk for B12 deficiency.

You say "I seem to have a lot of the symptoms listed under B12 deficiency." so can you match with any of the above "risks"? If you can, you can either remedy it yourself (e.g. diet) or present this information to your doctor for further investigation.

I wish you well for the future.

Mamabear52 profile image
Mamabear52 in reply to clivealive

Thank you Clive, I am now over 60 and have suffered from anaemia in the past, I also have irritable bowel and Sjogrens Syndrome. I just feel constantly tired and don't sleep very well, also suffer from anxiety and restless legs. I have now just started on B12 spray so will see if that helps.

Allyson1 profile image
Allyson1 in reply to Mamabear52

Restless legs and anxiety were early symptoms for me.

clivealive profile image
clivealiveForum Support in reply to Mamabear52

Hi Mamabear52 , IBS puts you at risk of B12 deficiency, You don't say what your diet is like. Can you eat red meat, fish, poultry, eggs or dairy products? The only natural way of getting B12 is through those kinds of food.

I hope you soon get to feel the benefit from your spray but am disappointed that your GP didn't suggest giving you a course of B12 injections to get your levels up quickly. Sadly it may take a while to repair the "damage" already done.

In my own case it took 13 years between gastric surgery and diagnosis of Pernicious Anaemia and all I can say is "if only".... However I'm still "clivealive" at 75.

Mamabear52 profile image
Mamabear52 in reply to clivealive

Hi Clive, I have a pretty healthy diet with red meat about once a week on the other days it will be either a vegetarian meal or chicken or fish, I also have dairy products plus fruit and nuts. My doctors response to my blood test results was that they were all within the 'normal' range no action required!

Allyson1 profile image
Allyson1

It's possible. I had symptoms show up in the low 400s pg/ml. I ultimately got neuro symptoms, and they return if I am in the 300s. My doctor treats this as low.

My last test was 324 I think, and I had numb hands and feet and face, sighs, fatigue, memory loss, etc coming back, so they've upped my shots again.

Mamabear52 profile image
Mamabear52 in reply to Allyson1

Hi Allyson I get the sighs, fatigue and memory problems like you but haven't really noticed any numbness anywhere, I have also suffered from ectopic heart beats for years that have just been diagnosed as benign and not to worry although the doctor said he could give me some beta blockers which I refused. I'm now wondering if they could be caused by the low B12. I just wish I could find a doctor with more knowledge of this problem.

Allyson1 profile image
Allyson1 in reply to Mamabear52

The numbness doesn't necessarily show up right away...mine took maybe a year and a half. Tinnitus came first, and pallor, migraines, photophobia, fatigue...

I would look at the checklists on the PAS website and b12deficiency.info.

Hopefully you will be lucky and find a doctor who can look into these things, but it is very tricky. You could push for more testing like homocysteine, methylmalonic acid, megaloblastic anemia, etc.

My homocysteine was a lways in the normal range, but it did decrease with supplementation.

bkerch55 profile image
bkerch55 in reply to Allyson1

How quick do you typically feel better after the first injection? Could it take a few weeks? My number was 348.

Mamabear52 profile image
Mamabear52

Don't know if anyone can understand these results but this is what mine were:

B12 320 ng/L

Ferritin 66 ug/L

Folate 6.6 ug/L

MCV 92.6 fL

MCH 30.6 pg

MCHC 331 g/L

Haematocrit 0.37

Haemoglobin Estimation 123 g/L

Allyson1 profile image
Allyson1 in reply to Mamabear52

I think you need reference ranges too?

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