A little advice please as confused

[Swiftmountains]

Had a b12 blood test first one 124 level the next 156 is this a normal level

Thank you in advance

[clivealive Forum Support]

Hi Swiftmountains the test result of 124 shows that you are low in Vitamin B12 and you will need to supplement either by mouth or injection to get the level up.

What is your doctor doing to treat you?

[Swiftmountains in reply to clivealive]

Hi cliveive, that the thing because the last one was 156 my neurologist said nothing to be done!!! That is why I am confused

[clivealive Forum Support in reply to Swiftmountains]

The lower figure of 156 shows the bottom level of the "acceptable" range and I am somewhat surprised that the neurologist said "nothing to be done"

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

Do you have any of the above symptoms? Presumably you were seen by the neurologist for a reason.

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), Pancreatic insufficiency, 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.

Can you "see yourself" among any of the above people?

Has your normal doctor seen the test results?

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

I wish you well.

[Swiftmountains in reply to clivealive]

Yes , I have quite a few of these symptoms.... I have quite a few illnesses that have my neurologist on his toes and have always trusted him , but my doctor sometimes disagrees with him ... so she might have a different thought on his and I am seeing her tomorrow

[Swiftmountains in reply to clivealive]

Just looked at my letter again and he said the the higher level is in the normal range ??? So confused

[clivealive Forum Support in reply to Swiftmountains]

Sorry I misunderstood - I didn't read your original comment as you having had two tests but that you were reading the first two numbers on one test.

The 156 result would probably be within the "normal" (I hate that word) range but 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...

In other words even though one of the tests was within range that fact that you have "strong clinical features of deficiency" (symptoms) you should be treated.

Make a list of your symptoms and present this to your doctor and ask her 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...

Please remember that I am not medically trained.

[Swiftmountains in reply to clivealive]

Thank you clivealive , I hate the word normal too as what does that actually mean.... I will do as you suggested and write down symptoms and going to read the guidelines now.

[pvanderaa]

Did you get a cooy of the results? Limits vary test to test and lab to lab but should have been included with the results, as well as the units of measure.

Units are typically pg/ml (same as ng/L).

Labs in US add a caveat when results are under 400 pg/ml that 10% of the population exhibit neurological symptoms in a hidden “occult” deficiency.

Japan treats it as a deficiency when results are less than 500 pg/ml.

Upper limit of the test is >1500pg/ml and this is where I like to be while on injections to heal my nerve damage and feel “normal “.

[Swiftmountains]

Hi pvanderaa , no I just received a letter stating the two levels and nothing to be done ... but I am seeing my doctor tomorrow... so I will ask .

[fbirder]

It's impossible to say if they are low without knowing two things -

The units (normally pg/mL or pmol/L) - otherwise it's like asking is 25 is a long way to walk (yes if it's miles, no if it's yards).

The normal range (normally in brackets, something like 115-600). Different labs use different assays with different normal ranges. So Hull and East Yorkshire NHS trust use a range of 115 - 1000 pmol/L. If you tested at 124 with them then it wouldn't be low.

However, HEY might still treat you if you had the symptoms of a B12 deficiency.

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

[Swiftmountains in reply to fbirder]

Hi fbirder, I have no idea what the units are as just received a letter stated the two results ... but will ask doctor tomorrow... thank you for helpful advice .

[sbadd]

My level was 148 and doctor treated me with loading doses 6 injections over 2 weeks im in Australia and my level was classed as deficient

[Cherylclaire Forum Support]

Hi Swiftmountains - have you seen the GP yet ?

Did you manage to get any clarity regarding the results, units or range used in your area?

Is it usual for you to receive results by letter? (That's just curiosity really)

...10 minutes goes so fast, doesn't it ? I hope you got some answers.

[Swiftmountains in reply to Cherylclaire]

Hi Cherylclaire, sorry yes I did she said it was in the normal range and that I did not need any treatment!!

Good news whoop 😀

Also the doctor is going to ring my neurologist and see if I can see him quicker ..... I have a rare disease that attacks everything

Thank you for taking the time to see how I was doing

Xxx

[Cherylclaire Forum Support]

Good if you can get a faster appointment - GP seems to be working hard on your behalf. Really sorry to hear about rare disease that attacks everything: that alone would speed up an appointment, I would think- and probably explains why you are sent your blood test results. Does it have a recognisable name ? Is it autoimmune related ? Again, just curiosity.

Still think B12 level is low personally, and something to watch- but you clearly have a lot going on right now. Keep results so you can compare in future, will you Swiftmountains ?

clivealive has given you a list of what to look out for.

Wishing you all the best x

[Swiftmountains in reply to Cherylclaire]

Cherylclare, yes gp is good she has been with me all the way.... no I don’t mind you asking it is called hereditary complicated spastic paraparesis and with it I have optic atrophy and deafness .... also I have rheumatoid arthritis, asthma, liver problems and cancer twice ....but I am ok and strong .... hahaha you asked 😂😂😂I will keep a check on my b12

[Cherylclaire Forum Support]

Yes I did ask; that is a load of coping, Swiftmountains - so glad you are strong and have a good GP on your side !

Only one thing occurred to me (aside from the fact that I've got some reading up to do clearly !) - B12 reserves (several years' worth) are stored in liver- so might your liver problems have caused B12 storage problems ? Possible link or over-simplistic ?

Have you had your methylmalonic acid (MMA) level tested recently ? If raised, can indicate B12 deficiency, liver problems or SIBO (small intestine bacterial overgrowth).

I'm seeing an adult inherited metabolic diseases specialist in a couple of months. Wonder if this is an area that might be of use to you ?

[Swiftmountains in reply to Cherylclaire]

Hi Cherylclaire, I don’t know it seems I have some reading to do as well

Adult inherited metabolic diseases, definitely seems interesting to me, hope you are ok?

I would like to know more if possible

[Cherylclaire Forum Support]

To be honest, I think he became a lot more interested in me when I told him about family history- specifically the number of family members on autism spectrum. I believe there is a link between autism and B12 deficiency - although I'm not medically trained, Sally Pacholok (who does have a medical background) has talked about this in her book. She also has a website about B12 awareness.

The consultant told me that there will be a story, that there is always a story, but that I'd have to wait a year to hear it, and then, although I am his patient, it might be of more use to the next generation of my family, rather than me. He was recommended to my GP by a haematologist in her report.

I have (probably) functional B12 deficiency, meaning for some unknown reason, B12 finds it hard to get to cell level. Constantly topping up to keep symptoms at arm's length, rather than a cure - only get worse if I try to lower frequency, so I don't now. Okay though, at least it's controlled -and I no longer have to cling on desperately waiting for someone else to decide on my frequency. Yay.

Ask your good GP for a referral to the Adult Inherited Metabolic Diseases consultant, if you think it is relevant to you, would like more answers and don't mind a long wait to hear your story ! If she is unable to make that referral, perhaps the neurologist could help ?

All the best, Swiftmountains

[Swiftmountains in reply to Cherylclaire]

Cherylclaire sounds like you have had a lot going on too....hard to wait a year to hear your story!!

I know everyone wants to help the next generation but hard to hear and take on board .

if I could help the next generation I would , just to stop them going through any of this

.

All the best to you too and you know it will be a long wait for me to get more answers

Keep me updated all the best

Rachelmb