My blood test results: I got my blood... - Pernicious Anaemi...

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My blood test results

SKYROCKET123 profile image
6 Replies

I got my blood test results back. I have foot and hand twitching, numbness, tingling and pins and needles, clumsy when walking and various other 'neurological' signs and am Hypothyroid but my B12 is clearly well in range. I don't understand because from when I supplemented it I felt instantly better. I;ve felt great since I've been taking B12 (although still foot and hand twitching now and then and buzzing foot sometimes)

Does this mean it's more likely MS? I feel gutted to be honest because I thought I'd cracked it with the B12

Blood haematinic levels

Serum vitamin B12 level 414 pg/mL [191.0 - 663.0]

Serum ferritin level 88 ug/L [12.0 - 233.0]

Serum folate level 8.9 ng/mL [2.4 - 26.8]

Thyroid function test

Serum free T4 level 16.4 pmol/L [11.0 - 26.0]

Serum TSH level 1.17 mU/L [0.27 - 4.2]

Serum total 25-hydroxy vitamin D level 52.5 nmol/L

Total 25OH VitD >= 50 nmol/L suggests VitD sufficiency.

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SKYROCKET123
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6 Replies
Nackapan profile image
Nackapan

Your b12 has risen with your b12 oral supplements.If they work keep taking them.

Go by your symptoms.

SKYROCKET123 profile image
SKYROCKET123 in reply toNackapan

The blood test was before I started taking the B12 though. I am vegetarian too so I'm baffled why my B12 would be so high. I had ordered some B12 ampoules from Germany I was that convinced I was B12 deficient. Can I harm myself if I use them? I just can't get over the difference in how I feel since taking the B12, even my husband was blown away by the difference. Is it possible to have a level in the 400s and still be deficient?

Nackapan profile image
Nackapan in reply toSKYROCKET123

Yes.Functional b12 deficiency

B12 will not harm you going by the evidence from The b12 clinic in the Netherlands.

Also nothing found her on scientific papers here.

Look through sleepybunny links.

Viy D if I'm reading it right only just in range .

But as you say blood results look good

.

Keep a symptom diary. And a record of any supplements .

Ms symptoms do mimic b12 deficiency.

Get a referral to a neurologist if concerned.

They can rule out things as well as as diagnose.

Gambit62 profile image
Gambit62Administrator in reply toSKYROCKET123

There is a small risk from injecting if not done correctly.If you are getting on okay with oral supplements then continue with them.

Scott-rock profile image
Scott-rock

I’m still learning about this condition, but your folate looks to be at the low end of the range.

Sleepybunny profile image
Sleepybunny

"Is it possible to have a level in the 400s and still be deficient?"

From personal experience yes....

I did have a below range B12 result in past for which I only got one set of 5 or 6 loading injections and then nothing else.

At the time, I trusted my GPs knew what they were doing but I should have had every other day loading injections (because I had many neuro symptoms) and then regular maintenance injections because it was not dietary deficiency. PA tests were negative.

When my symptoms were at their worst, my serum (total) B12 results were between 300 - 500 ng/L.

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

Summary of BSH Cobalamin and Folate Guidelines

pernicious-anaemia-society....

Includes the statement...

"In the presence of discordance between test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment"

NHS link about B12 and Folate deficiencies includes statements below

"But some people can have problems with their normal levels of these vitamins"

nhs.uk/conditions/vitamin-b...

"Some people can experience problems related to a vitamin B12 deficiency, despite appearing to have normal levels of vitamin B12 in their blood.

This can happen as the result of a problem known as functional vitamin B12 deficiency"

NICE CKS link about B12 and Folate deficiencies includes statement below

"Note: clinical features of vitamin B12 deficiency can occur without anaemia and without low serum levels of vitamin B12."

cks.nice.org.uk/topics/anae...

Point 5 in letter writing link below mentions functional B12 deficiency.

It discusses what to say to GP if patient has the symptoms of B12 deficiency with a normal range serum B12 result.

b12deficiency.info/b12-writ...

Article from Dutch B12 website about serum (total) B12 test, mentions false normal results

(units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Misconceptions

Next few articles mention common misconceptions (wrong ideas) about B12 deficiency

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

UK treatment guidance has changed since blog post was written.

Diagnosis and Treatment Pitfalls(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

Referrals

I suggest you push for a referral to a neurologist.

Be warned that there is a lot of ignorance about B12 deficiency among GPs and specialists so be well prepared for any appointments.

NICE guidance Suspected Neurological Conditions

nice.org.uk/guidance/ng127

NICE when to refer B12 deficient patient to haematologist/gastro-enterologist/neurologist

cks.nice.org.uk/topics/anae...

Referrals cost money so GP surgery may be reluctant.

I used to put requests for referrals into brief, polite letters and included reasons for request eg symptoms and also included evidence such as quotes from UK health/medical documents that supported the request.

Local Guidelines

I also suggest you track down the local guidelines on treatment/diagnosis of B12 deficiency for your CCG or Health Board and compare the info with BNF, NICE and BSH links below.

BNF Hydroxocobalamin

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

BSH Cobalamin and Folate Guidelines

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

NICE CKS B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

There may also be local guidelines on referrals to neurology etc.

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

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