B12 level 460 but lots of symptoms. F... - Pernicious Anaemi...

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B12 level 460 but lots of symptoms. Ferritin 52

6 years ago•9 Replies

hello,

I have lots of the symptoms, if not all. My Doctor wont' treat me yet.. is it worth doing it privately? or self injecting? I just don't want to feel tired anymore. Big history of Thyroid problems in my family too, although they say my level is normal.

Help!

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Twilighthours72

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clivealiveForum Support6 years ago

Hi Twilighthours72 if you feel that your neurological symptoms are B12 related despite your level being "Normal" (I hate that word) you could mention to your doctor that 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...

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

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

Twilighthours72 in reply to clivealive6 years ago

Thank you! i'm having heart palpitations, memory issues, balance issues, dizzyness, out of breath, tinitus

Scazzoh in reply to Twilighthours726 years ago

Have you heard of the Thyroid UK forum on Health Unlocked? If you post your results for the thyroid tests you have had, plus the ranges (the numbers in brackets) on that forum, you will get some good information about whether the results are truly 'normal'. Doctors use the term 'normal' when they don't want to treat you properly, despite symptoms. You are likely only to have had the TSH test for your thyroid function, but that will give some indication of what is going on.

clivealiveForum Support in reply to Twilighthours726 years ago

If you feel "brave enough" (and this is only assuming it is B12 related and not some other cause) 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.

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.

Twilighthours72 in reply to clivealive6 years ago

Thank you very much for the further information on this. Would you know the best place to source my own B12, to self inject? and also which folate to take? at the moment i just take Spatone. Victoria

ChitN in reply to Twilighthours726 years ago

I ordered from here: oxfordbiosciences.com on recommendation from someone in this group. I haven’t received it yet however.

Twilighthours72 in reply to ChitN6 years ago

Thank you!

clivealiveForum Support6 years ago

No, I'm sorry I cannot help as (fortunately) I get all my prescriptions for injections from my surgery.

I suggest that you ask the question in a new post as there are many others on here who do source from abroad and it is likely to be "picked up" rather than at the end of a long thread like this.

Sleepybunny6 years ago

Hi,

"B12 level 460 but lots of symptoms"

I had many typical symptoms of b12 deficiency for many years with B12 results mainly between 300 and 500ng/L.

"My Doctor wont' treat me yet.. is it worth doing it privately? or self injecting?"

The problem with supplementing without a diagnosis is that it can make it very difficult to get a diagnosis.

Link about What to Do Next if B12 deficiency is suspected

b12deficiency.info/what-to-...

Some B12 links that may be of use. Some info may be specific to UK.

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/... (may need to be B12d.org member)

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

UK B12 documents

If you're in UK, I'd suggest reading all of these.

BSH guidelines and BMJ article recommend that in UK, people who are symptomatic for b12 deficiency should be treated even if B12 level is within normal range.

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

bnf.nice.org.uk/drug/hydrox...

NICE CKS

cks.nice.org.uk/anaemia-b12...

More B12 info in pinned posts on this forum.

Unhappy with Treatment (UK info)