Pernicious Anaemia Society

Epilepsy?

Hi all. I have been told by the GP that I do not have Pernicious Anaemia, but despite 3 monthly B12 injections my b12 is still low by the end of the 3 months. Last May I had two seizures, in my sleep. Saw neurologist, he didn't give any reasons for it, just discharged me. Last weekend I had another. I have now been diagnosed with epilepsy and put on medication. I was wondering if there is any link between low b12 and seizures? Maybe I am grasping at straws...

Any advice or info would be appreciated

Dawn x

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B12 and seizures are not unknown: ncbi.nlm.nih.gov/pubmed/194...

Its conclusion is: "Vitamin B12 deficiency should be also considered in the differential diagnosis of the causes of epilepsy."

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PA isn't the only absorption problem that will lead to a B12 deficiency but it is the most likely.

Because the schilling test is no longer available and the IFA test is not a particularly sensitive test it is very difficult to rule out PA as a cause. IFAB test gives a false negative 40-60% of the time depending on the exact test method so a negative is a long way from ruling out B12 and in the absence of another obvious condition (damage to the terminal ileum, coeliacs, crohn's ...) the BSCH standards refer to IFAB-negative PA as a result. It may be worth drawing this to the attention of your GP if they are basing you don't have PA on the IFA test.

Your GP can access the guidelines through the BNF (assuming you are UK based) but they can also be accessed here (again, assuming you are UK based)

onlinelibrary.wiley.com/doi...

this is a link to a search on PMC - a US website giving access to papers and abstracts on medical research etc

onlinelibrary.wiley.com/doi...

have looked at the following two articles (just because seemed to me that they were most likely to come up with something that linked B12 to epileptic fits

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

caveat on this is that its about epilepsy in dogs so not necessarily in humans but it does mention B12 deficiency as a potential cause for ideopathic epilepsy

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

mentions B12 in section 6.11 in relation to MMA leading to epileptic fits.

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Gp isn't interested. I have given all the information, he refuses to read it. He just says You do not have PA. I am on antidepressants and now on Epilepsy meds. I am concerned about taking too many meds for problems I don't have

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Hi,

"told by the GP that I do not have Pernicious Anaemia"

Why does GP think you do not have PA? Did you test negative on IFA Intrinsic factor Antibody test?

Flowchart in next link outlines when PA and Antibody Negative PA can be diagnosed in UK.

stichtingb12tekort.nl/weten...

If he's convinced it's not PA then what does he think is causing your low B12?

Risk factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

"I have given all the information, he refuses to read it"

If the info is put into a letter addressed to GP rather than passing on a set of documents then it may get taken notice of. My understanding is that letters to GPs in UK, are filed with medical records.

Some people consider informal complaints and even formal complaints when unhappy.

Link about writing letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1in above link is about under treatment of B12 deficiency with neuro symptoms.

CAB NHS Complaints

citizensadvice.org.uk/healt...

nhs.uk/NHSEngland/complaint...

HDA patient care trust

hdapatientcaretrust.com/

UK charity that offers free second opinions on medical diagnoses and medical treatment. Think they use a network of specialists across UK.

"despite 3 monthly B12 injections"

Seizures are usually considered to be a neurological symptom.

Do you have other neuro symptoms?

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/... (may need to be B12d.org member)

In UK, recommended treatment for those with B12 deficiency with neuro symptoms is

a B12 loading jab every other day for as long as symptoms continue to get better (could mean loading jabs for weeks even months) then a jab every 2 months

For those with B12 deficiency without neuro symptoms

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

You seem to have been put on the treatment regime for those without neuro symptoms.

UK B12 treatment info can be found in

1) BNF British National Formulary Chapter 9 Section 1.2

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

2) NICE CKS

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

3) BSH Cobalamin and Folate Guidelines

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

My understanding (i'm not medically trained) of BSH Cobalamin and Folate Guidelines is that any patient with B12 deficiency with neuro symptoms should be on the neurological treatment regime, whatever the cause of the B12 deficiency.

NICE CKS (clinical knowledge summary) and I think the BSH guidelines suggest that GPs should seek advice from a haematologist for patients with B12 deficiency with neuro symptoms.

Has your GP contacted a haematologist?

B12 books I found useful

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. martyn hooper is the chair of PAS.

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

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

Comprehensive book about B12 deficiency with lots of case studies. Think epilepsy/seizures are mentioned.

PAS (Pernicious Anaemia Society)

If you suspect PA or Antibody Negative PA then may be worth joining and talking to PAS.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

B12 blogs

May be relevant stories on Martyn Hooper's blog or B12 Deficiency info blog

martynhooper.com/

b12deficiency.info/blog/

I am not medically trained.

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Hi

Thanks for all that. I had problems with anxiety, depression and fatigue, joint pain in my left elbow, shooting down into my hand, numbness in my fingers. I had a low b12 result in the summer, I can't remember the numbers now. I had the two week loading dose but symptoms returned after a couple of weeks. The GP refused to listen to my symptoms, he did a blood test and said my b12 was high now. Well I knew that having had a fortnight worth of injections. I am a member of PAS, I have Martyn Hooper's book, and I have read all the documents you have listed. I have spoken to Martyn Hooper on the PAS line but he was not able to help me. I have written a letter to the GP using the information given above, and enclosed the flowchart and the information about PA. His response was You do not have Pernicious Anaemia. I asked how he could be so sure, he did not answer, just kept repeating the same sentence, and telling me PA was a red herring and I am suffering with anxiety and depression. I could not make him listen to me, he just kept repeating the same. Nobody has linked the seizures with low b12, it was just something I have thought of today as I am worried about the antidepressants possibly causing the seizures (the GP says not), now taking Lamotrigine for control of epilepsy. I will ask the question regarding b12 and seizures the next time I go to the GP.

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I'm sure you're both stressed and low with all that's going on, but anxiety and depression may not be the answer to your symptoms. Your GP sounds really unhelpful - repeating 'you don't have PA' with no discussion or justification is just rude. Is there any way you could see a different GP?

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