Pernicious Anaemia Society

Can anyone help? potential Pernicious Anaemia!

Hello,

I went to see the doctors last year (2016) in May for more blood tests. (I have been back and forth for 10 years with a variety of symptoms the most difficult being the fatigue with multiple misdiagnoses and frustration). The blood results 2016 showed my b12 was very low but just within range and my vit D was below range and my folic acid was also very low within range. They gave me 6 loading doses of B12 injections over 2 weeks and told me to come back in a year and that they don't think I have a b12 deficiency. I felt better at first but now a year on i'm feeling constantly tired, memory is bad, brain fog, cant concentrate, etc.

My new results Sept 2017 say:

Serum vitamin B12 level 214 [197-771] If B12 status is in doubt suggest check plasma homocysteine and serum methylmalonic acid. (DOES ANYONE KNOW WHAT THIS MEANS?)

Serum folate level 1.8 [3.9-25]

They have just prescribed me folic acid. Im a 26 year old female.

Thank you for taking the time to read this.

Yvette

5 Replies
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Hi YvetteMayS,

Are you in UK?

I'm asking because patterns of B12 treatment vary from country to country.

If you're in UK, I'd suggest reading the following documents/articles.

1) BSH Cobalamin and Folate Guidelines

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

Document was publised in 2014. It gives guidance on diagnosis and treatment of b12 deficiency in UK.

Some UK GPs may not be aware of this document.

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines when PA and Antibody Negative PA can be diagnosed in UK. Makes it clear that people who are symptomatic for B12 deficiency in UK, should have an Intrinsic Factor Antibody (IFA) test and start initial B12 treatment whether B12 is low or within range.

IFA test can help to diagnose PA but test is not always reliable and peopel may still have PA even if IFA test is negative (called Antibody Negative Pernicious Anaemia).

2) BMJ B12 article

bmj.com/content/349/bmj.g5226

Article emphasises the importance of treating people who are symptomatic for B12 deficiency even if B12 result is within range in order to prevent neurological damage.

3) British National Formulary (BNF) Chapter 9 Section 1.2

BNF has details of UK B12 treatment.

All UK Gps will have access to BNF, probably a copy sitting on desk. It's possible to get own copy of BNF from good bookshop or internet retailer.

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

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

Details of UK B12 treatment is also in BSH Cobalamin and Folate Guidelines, about a quarter through guidelines.

Are you symptomatic for B12 deficiency?

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Risk factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin 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 book about B12 deficiency with lots of case studies.

"Serum vitamin B12 level 214 [197-771] If B12 status is in doubt suggest check plasma homocysteine and serum methylmalonic acid."

Blood tests

b12deficiency.info/b12-test...

b12deficiency.info/what-to-...

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

patient.info/doctor/folate-...

"They have just prescribed me folic acid. "

I have read that it is imprtnat to treat any co-existing B12 deficiency in someone who is being treated for B12 deficiency, See management section in link below for more info.

patient.info/doctor/folate-...

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone available

Based in UK but has members from around the world.

If you suspect PA (Pernicious Anaemia) is a possibility then it may be worth joining PAS. Costs about £20 for membership for a year. They can offer info and support. In some cases they can intervene on behalf of members.

PAS members can access details of PAS local support groups. There are several in UK. Can be a valuable source of info about helpful GPs etc.

pernicious-anaemia-society....

B12 blogs

There may be stories on Martyn Hooper's blog about PA and B12 issues that are relevant to you eg people trying to get a diagnosis.

martynhooper.com/2017/07/01...

martynhooper.com/2010/09/21...

There is also an interesting blog on "B12 Deficiency Info" website about B12 issues. Person who runs B12 Deficiency Info website can be contacted by e-mail. Contact details on website.

b12deficiency.info/

Unhappy with treatment (UK info)

Link about writing letters to GP about b12 deficiency

Point 1 is about undertreatment of B12 deficiency when there are neuro symptoms.

Point 5 is about being symptomatic for B12 deficiency with an in range B12 result.

CAB

citizensadvice.org.uk/health/

HDA patient care trust

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

hdapatientcaretrust.com/

More B12 info

Lots more B12 info in pinned posts on this forum. I found it helpful to read fbirder 's summary of B12 documents. link to summary in third pinned post.

There are other conditions that have symptoms that overlap with those of B12 deficiency.

Have you been tested for Coeliac disease?

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

nice.org.uk/guidance/ng20

Thyroid disease?

thyroiduk.org/

GPs sometimes only order TSH tests which will not give full picture of thyroid function.

There is a very active Thyroid UK forum on HU .

I am not medically trained just someone who has struggled to get a diagnosis.

2 likes
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Thank you so much. I am in the UK and have got a pernicious anaemia membership for the society. I have lots of the symptoms including tinnitus. Really hoping to get the help i need finally! X

Reply

If you're a PAS member, might be worth talking to them before your next appt with GP.

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Serum vitamin B12 level 214 [197-771] If B12 status is in doubt suggest check plasma homocysteine and serum methylmalonic acid. (DOES ANYONE KNOW WHAT THIS MEANS?)

The lab is suggesting a couple of additional tests that could help to clarify B12 status. Homocysteine not a helpful suggestion in this instance as your folate levels are low which means that homocysteine levels are likely to be raised anyway - MMA would be the better test. Both these are harmful chemicals that build up if you don't have enough B12 to recycle them. homocysteine will also be raised by not having enough folate. Both can also be raised by other factors so tests need to be done in a context.

Think sleepybunny has probably covered the 'come back in a year' nonsense. depending on symptoms (ie any neurological involvement or not) standard treatment would be maintenance at either 2 monthly or 3 monthly intervals.

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I personally believe different people have symptoms at different blood levels of B12. If you are having PA symptoms, at least take sublingual in large doses and see if it helps, but I don't see why drs are so adverse to giving a prescription for B12 injections especially if the person pays for it themselves. It can't hurt and if you feel better....you feel better.

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