First blood results, now second results - Pernicious Anaemi...

Pernicious Anaemia Society

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First blood results, now second results

Hayleyjel profile image

Hi

First B12 blood test was back in March this year, catergorises as ‘LOW’ with a reading off 177.

Doctor refused to medicate me for this even though I was showing nuro symptoms too! After months of going back and forth and not getting anywhere, I have recently moved doctors surgery completely!

New doctor done new blood tests, categorised as low again with a reading off 165.

Since then today I have received my last loading injection and now will be having them every 3 months.

Have anybody else been refused even though through the guidelines it states low? I will attach old and new blood results. First image March’s results, second photo August results

7 Replies
clivealive profile image
clivealiveForum Support

Hi Hayleyjel well done for taking your health and well-being into your own hands by finding a doctor that is treating you - sadly they appear to be a bit thin on the ground in places.

Were you given folic acid as this works with iron and B12?

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

I wish you well.

Hayleyjel profile image
Hayleyjel in reply to clivealive

I can’t seem to attach my second photo, would you know how to do this?

No I was only given the loading injections, then they’ll be 3 monthly now

clivealive profile image
clivealiveForum Support in reply to Hayleyjel

I think you will need to open another post for your second set as only one photograph per post is allowed. Either that or "photoshop" the two together and edit your original post. Please don't ask me how to do it as I'm just a 77 year old technophobe :)

Are you able to eat plenty of leafy green vegetables - sprouts, broccoli, asparagus, spinach, peas, beans etc as these are the natural source of Folate. You will also find folic acid fortified into many breakfast cereals

Hayleyjel profile image
Hayleyjel in reply to clivealive

Thanks Clive Haha! Shall edit the post now!

Yes I eat greens at lest 5days a week! I never used to but I’ve changed my diet recently so hoping that will help

Just had a row with dr for him refusing to treat low b12.

Hi Hayleyjel

The NHS Guidelines say that with neuro symptoms you should have injections every 2 months.

There is also a bit about - after your loading injections with neuro symptoms you should continue until no further improvement.

I will find the link and add it.

PS It is in the 3rd post pinned on the right "Information about Pernicious Anaemia and B12 deficiency from the Pernicious Anaemia Society"

Hi,

As beginner 1 says, if you have neuro symptoms, UK recommended treatment is...

A B12 jab every other day for as long as symptoms continue to get better then a jab every 2 months

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

UK B12 treatment info can be found in links below. Emphasis in recent B12 guidelines is that patients who are symptomatic for B12 deficiency should be treated even if B12 is within range.

UK B12 documents

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...

There is a useful summary of mainly UK B12 documents in third pinned post on this forum.

What does GP think is causing the B12 deficiency?

Have you been tested for PA (Pernicious Anaemia)?

In UK, test for PA is an Intrinsic Factor Antibody test but it is not always reliable. It is still possible to have PA even if IFA result is negative. BSH Flowchart above shows when PA and Antibody Negative PA can be diagnosed in UK.

Your GP may not be aware of the BSH Cobalamin and Folate Guidelines which were published in 2014.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Diet

Do you eat plenty of B12 rich foods eg meat, fish, shellfish, eggs, dairy? If yes then diet as a cause becomes less likely and it becomes more likely that there is an absorption problem in the gut.

Coeliac disease

NICE guidelines Coeliac Disease (2015 version) recommends that anyone with unexplained B12, folate or iron deficiencies should be tested for Coeliac disease.

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

H Pylori infection

patient.info/health/dyspeps...

If PA is a possibility, might be worth joining and talking to PAS.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. PAS can offer support and info about PA.

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.

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about under treatment of B12 deficiency WITH neuro symptoms. Lots of useful b12 info in this 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.

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