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Low enough to cause symptoms?

JaneyMc3 profile image
7 Replies

Hello lovelies. Please may I call upon your considerable wisdom?

I saw my GP approximately 2 months ago as I've been feeling wiped out, having dizzy spells and been ridiculously grumpy/ low.

This time last year I was deficient in iron so assumed it was that. I had blood tests which the doc said were normal and sent me on my way. Luckily I asked for a print out as I left and though 'normal' they look a little low to me.

Serum B12 280ng/L 197.00-1999.00ng/L

Serum Folate 6.7ug/L 3.90 - 20.00ug/L

Serum Ferritin 32ug/L 13.00 - 150.00ug/L

After reading these I started researching B12 deficiency and realised that I've got further symptoms. I've been getting a numbness/ tingling in my left foot for months now (assumed it was back related) and also been having stomach problems. I've been taking lansoprazole for 17 years now so could that be causing malabsorption problems?

To save time and NHS money I ordered an active B12 test and the result is

39.6pmol/L Range 25.10 - 165.00

I'm a bit stumped as to what next. Are these results low enough to cause issues?

Do I see the Dr? I'm not the most assertive person in the world so if I do, what are the best print outs to take to assist my case?

Or do I start self supplementing and if so, with what.

Thank you so much for reading and if you have any advice, I would be tremendously grateful.

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clivealive profile image
clivealiveForum Support

Hi JaneyMc3 I hate that word NORMAL and these ranges are based on an "average" person on a day when the sun was shining and the month had a V in it.

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

Your levels are indeed all at the lower end of the ranges and 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...

This means your doctor should be looking at you instead of his computer screen.

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

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

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following - do you "see" yourself among any of these people?:

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.

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

I wish you well.

JaneyMc3 profile image
JaneyMc3 in reply to clivealive

Thank you so much!

Alfabeta profile image
Alfabeta

Hi Janey

I was on omaprezole for 15 years and became b12 deficient but I was a vegetarian so I wasn’t getting enough in my diet anyway. The over subscribing of these ppi drugs is verging on the scandalous.

I should read up on b12 and b9 deficiency on the NHS website.

Good luck.

JaneyMc3 profile image
JaneyMc3 in reply to Alfabeta

I completely agree with you on the PPI drugs! A ticking time bomb I reckon.

Thank you for your reply.

fbirder profile image
fbirder

The serum test isn’t very reliable, so your value of 280 may be considered low. But the Active B12 test is hailed as being much better, so your result of 39.6 is well into the normal range.

That doesn’t mean that you aren’t deficient, but it will make it difficult to get treatment.

Long-term use of PPIs can affect absorption, so a deficiency wouldn’t be surprising.

Go see the doc. Don’t mention the active test. Ask for a trial of B12 injections as suggested in this NHS leaflet...

hey.nhs.uk/wp/wp-content/up...

JaneyMc3 profile image
JaneyMc3 in reply to fbirder

Cheers for that! I'll give it a shot.

dianewilson1900 profile image
dianewilson1900

Janey, it's good you did independent lab testing because you are in the GREY area for B 12 and that causes problematic symptoms for many people where they are.tired and have the symptoms you are describing. I am severely low in B 12 and just saw my doctor. Mine is 119.3. I live in the US. He told me that 145 or less is deficient. 145 to 180 is GREY area but still, that is a problem for many, and 180 or above is optimal. As for ferritn, mine is normal so I can't tell you if yours is low. But others on this thread can. Do not take B 12, folate or any supplement on your own! It will skew test results and you will be denied the potent supplements you need from a physician. Find a doctor who will give them to you. Switch doctors if you have to. And tests aren't always reliable too. Its not just a matter of HOW MUCH B 12 is in your blood that counts, but more importantly, how WELL your body is utilizing that B 12 and how well your body is absorbing it. Really the best way to tell if any supplement is working Is to go by how you FEEL and if your symptoms are going into remission. That's the most reliable "test", in my opinion. If your doctor does give you B 12, see if you can get him to give you folate at the same time. Folate helps B 12 work better. But try to hold off on supplementing on your own for now if you can... Good luck!

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