B12 levels are high but....... - Pernicious Anaemi...

Pernicious Anaemia Society

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B12 levels are high but.......

Space69 profile image
8 Replies

Hi - I’m new to this, but will try to write my query.

Got diagnosed with PA by a gastroenterologist about 6 years ago ( I don’t have the intrinsic factor) B12 injections every 3 months until about 3 years ago, then down to every 2 months. But at 6 weeks, I go downhill fast. This past year, it’s been getting worse & it now affects my driving senses as well as myself/life/work, so have asked GP to go down to 6 weeks (3 or 4 days after having it - back to normal) Had BT but came back as 2000, so have said I don’t need to reduce time between injections. I’ve pushed the point as I, like so many other people, still have symptoms (which GP’s don’t understand), so have been advised I’d need to see a haematologist.

So, I’m doing what research I can to arm myself with evidence to present to GP.

Questions -

1) has anyone been in a similar situation & if you can share- what was your outcome?

2) if I’ve already been told I don’t have the intrinsic factor - what would a haematologist be looking for ?

3) has anyone been taken off B12 injections as their levels are too high?

Many thanks in advance

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8 Replies
Gambit62 profile image
Gambit62Administrator

the IFAB test is insensitive and gives false negatives 40-60% of time so a negative result doesn't rule out PA - the BCSH guidelines refer to IFAB negative PA as a resultonlinelibrary.wiley.com/doi...

unfortunately serum B12 is nigh on impossible to interpret post loading injections. The early studies on retention of B12 showed huge variation in retention with some people having very high levels of B12 over a year later. Unfortunately the studies don't record how people felt during that time - just serum B12 levels.

You could try pointing your GP at the area of the PAS website particularly aimed at helping medical professionals improve the diagnosis and treatment of PA and B12 absorption problems

pernicious-anaemia-society....

Space69 profile image
Space69 in reply toGambit62

Many thanks for your reply. Will look into your suggestions. Have requested a copy of blood test report, so I can see all the information, not just what they are telling me.

Sleepybunny profile image
Sleepybunny

Hi,

Some B12 info that might be of interest

Symptoms of B12 Deficiency

pernicious-anaemia-society....

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Symptoms of B12 deficiency and Folate deficiency

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

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

With a PA diagnosis, worth joining and talking to PAS who can offer support and pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership

pernicious-anaemia-society....

PAS website has lots of useful leaflets/articles that some forum members pass onto GPs.

pernicious-anaemia-society....

PAS article "TESTING B12 DURING TREATMENT"

pernicious-anaemia-society....

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Summary of above document

pernicious-anaemia-society....

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

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.

BNF Hydroxycobalamin

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

NICE CKS B12 deficiency and Folate deficiency

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

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

Each CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency. Worth getting hold of local guidelines for your CCG/Health Board and comparing them with BSH, BNF and NICE CKS links.

Two useful B12 books

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

BNF treatment info in book is out of date. See BNF hydroxycobalamin link in this reply for up to date info.

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

Very comprehensive with lots of case studies.

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.

Films and videos about B12 deficiency and PA

PAS conference 2019

pernicious-anaemia-society....

Films about B12 deficiency

b12deficiency.info/films/

Some UK forum members find NHS treatment is not enough and resort to treating themselves.

Links below are to forum threads where I left some more detailed replies with lots of B12 info which you may find useful eg B12 deficiency symptoms lists, UK B12 documents, causes of b12 deficiency, B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.

There may be some details in the links that could be upsetting.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained just someone who suffered with unrecognised B12 deficiency for years.

Space69 profile image
Space69

Wow! Thank you so much for the info & links. I shall make a start going through the links. Have just bought the book you mentioned last night.

JanD236 profile image
JanD236

Yes I’ve had similar but fortunately my GP allowed me to have monthly injections (instead of the two monthly I was receiving) for a ‘trial period’. Luckily the monthly frequency went onto my repeat prescription list so I’ve kept at that frequency for a few years now.

I did find after a while monthly wasn’t enough and I started si weekly and ultimately settled on twice weekly. This allows me to live a full active and sporty life with no peaks and troughs.

I don’t have the confidence to ask my GP for more frequent injections as the one who allowed it has since retired and I’m worried about losing the monthly prescription.

Space69 profile image
Space69 in reply toJanD236

Hi - many thanks for replying. Likewise with GP - first one retired. As the surgery is a teaching one, doctors are changing - so depends on their knowledge. However, it did work in my favour years ago, as it took me two years to be diagnosed with under active thyroid. It was only because of a newly qualified doctor, wanting to put her new knowledge to use, finally diagnosed me. I suppose I could hope for the same.....😊

FlyGranny profile image
FlyGranny

I was diagnosed years ago and handle my Pernicious Anemia myself. My doctor only prescribes syringes for me. I order my b-12 from Canada (cyancobalamine). Every time my doctor orders a b-12 level for me, I refuse it. Have no idea what my b-12 level is and I don’t really care what is. I go by my symptoms. Injections twice a week but occasionally I need a “boost “ and do an additional injection.

prillyb12 profile image
prillyb12

I'd be calling around to find an understanding GP.

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