Blood results..concerns over high B12 - Pernicious Anaemi...

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Blood results..concerns over high B12

PamBow
PamBow

Hi everyone, just hoping if someone can take a look at my last blood results please.

I had seen the Doctor previously about having B12 injection every 6 weeks instead of 3 monthly because of electric shock feelings in finger ends and anxiety symptoms showing early.

Bloods were taken in the morning without my having any food and my last Levothyroxin 50mcg I hadn’t had for 24 hours previously.

From the blood nurse taking bloods I saw another nurse for my first 6weeks B12 inj..... so I hadn’t had a B12 injection for 12weeks.

I have seen a doctor about high B12 showing on these results and he said have next injection in 10 weeks.

Think I just need some reassurance from my forum associates.

Thanks in anticipation.

6 Replies
oldestnewest

Hi,

1) Recommended UK treatment for B12 deficiency without neurological symptoms.....

6 B12 loading jabs over 2 weeks followed by a jab every 3 months

2) Recommended UK treatment for B12 deficiency WITH neurological symptoms....

A B12 loading jab every other day for as long as symptoms continue to improve then jab every 2 months

Did you have neuro symptoms when first diagnosed eg tingling, pins and needles, tinnitus, tremors, memory and balance problems plus others?

If yes and you're in UK, then my understanding is that second pattern of treatment is recommended. I wonder if you are experiencing neuro type symptoms (electric shock symptoms) returning before next 3 monthly injection because perhaps you did not have recommended amount of loading doses at start of treatment.

How many loading doses did you have when treatment started?

UK B12 treatment info in next links

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...

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

B12 books I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

Help for UK GPs

1) Section on PAS website for health professionals

pernicious-anaemia-society....

2) Leaflet in PAS library section " An Update for Medical Professionals: Diagnosis and Treatment " access to PAS members only.

pernicious-anaemia-society.... See Page 1 of articles.

3) I gave my GPs a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency"

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...

What did GP think was causing your low B12 when originally diagnosed?

Did you have a test for PA (Pernicious Anaemia)?

This would be an Intrinsic factor Antibody test in UK. Still possible to have pA even if IFA result is negative or normal range.

Were you tested for Coeliac disease?

NICE guidelines Coeliac Disease (2015 version)

nice.org.uk/guidance/ng20/c...

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

H pylori infection?

patient.info/health/dyspeps...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

I suggest reading info in above link.

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

I am not medically trained.

Hi , Thankyou so much for showing an interest in my concerns about high reading in my blood results of 2000 for my B12 .

Last Aug when I was first diagnosed with VitD deficiency , borderline hypothyroid and B12 I was given a months course of D3 ,

50mcg of Levothyroxin for thyroid and told 3 monthly B12 injection for life. I later found in my summary of treatments 3 months later that on my Systemonline for booking drs appt that it stated I had 5 loading shots of B12 before starting my 3 monthly sessions. I told the nurse and Dr about this( not having had them) but nobody seemed concern and I didn’t have the confidence to pursue it and now I that B12 is high I just thought it was maybe a good job I hadn’t had them,I just don’t understand any of it.

This is why I appreciate any input. Not sure if you saw my blood results... they were posted separately as I wasn’t sure how to display them... thanks Pambow .

Thanks for all the links Sleepy Bunny... I didn’t see them at first .

Nice clinical guidelines specify if intrinsic factor antibody is positive then b12 injections are for life. Furthermore no further testing of serum b12 is to be done as the results will be skewed and unreliable. If your doctor is under the mistaken belief that a water soluble vitamin like b12 is "too high" and withholding injections for ten weeks then: he/she is not following the evidence-based guidelines and potentially endangering your health in the process. Your b12 may not even be over 2000 but merely too high for the test to measure as well.

Chance15
Chance15 in reply to bdole2018

I just posted my results on here and had some advice of those folks.

Any way bdole18 I noticed on a letter my doctor ad written to Gastroenterologist that my intrinsic factor antibody is positive I didn’t know about the injections for life so a big thank you for that information.

It’s ok I start mine next week.

Thankyou so much bdole2018 for your comments.... I will post how I get on when I return to the surgery next appt I can get.

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