Pernicious Anaemia Society

Very new to this any help please

So very very new to this. I don’t think I have PA but I do have low B12. I have been feeling low for some time but I put that down to age, work and personal life (which I has not been good).

I started to have a strange hot, pricking tingling sensation in my back. Again I put this down my work. But it has become worse. I thought it might be shingles but with out the rash.

I have seen a lot about the tingling in feet hands but not the back. My GP order the blood test and found that my B12 is low. Started B12 jabs and had my 1st on Thursday got another 5 to go over 2 weeks.

My concern is the strange painful sensation in my back. Plus lack of ability to think straight. I would really appreciate anyone view on this as I’m to say the least a bit worried and very unsure.

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People vary a lot in how B12 deficiency affects them, and also in how they respond to B12 shots. It can take a while for symptoms to go and things can get a bit worse before they start to get better and you may notice aches and pains a bit more intensely.

Tingling in feets and hands is very common - don't come across back that often as a first manifestation of the tingling. Generally B12 symptoms tend to be symmetrical.

Suggest that you make a full list of symptoms - even ones that have been around for a long time as B12 deficiency can take a very long time to manifest and then monitor what is happening with them.

pernicious-anaemia-society....

Please also note that anxiety is another symptom of B12 defciency. The not being able to think straight is a very common symptom.

B12 is used by a lot of processes in the body - including those that make new red blood cells, resetting neurotransmitters, the processes that release energy in your cells, and the processes that maintain the lining around nerve cells. The most common cause of B12 deficiency is an absorption problem which is why you need injections. One very common symptom is macrocytosis - larger rounder red blood cells than normal - which is why B12 deficiency has become associated with the name 'pernicious anaemia'. This means that many GPs are under the mistaken impression that it is anaemia that causes all the problems.

Given that you had neurological symptoms, and assuming that you are in the UK there is actually a more aggressive regime but GPs often aren't aware. This is detailed in both the NICE guidelines and also in the BCSH guidelines which your GP can access through the BNF but can also be accessed here

onlinelibrary.wiley.com/doi...

treatment with neurological problems is loading shots (3x weekly) until symptoms stop improving followed by maintenance doses every 2 months.

Many people find that even every 2 months isn't frequently enough so if you find your symptoms are returning before that then there are options for supplementing, that you have probably already read on this forum.

It is probably worth asking for a copy of the results of the blood test so you can see if you had macrocytosis and what was happening with other vitamins and minerals - particularly folate and iron.

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Thank you so much for the information. I don’t want to be jumping to conclusions, the back sensation has been very disturbing over the last week or so, as it used to come and go but now it seems to be constant. I do get pins and needles in my legs and feet I have put that down as I sit cross legged.

I think I may be over thinking things, well I suppose only time will tell.

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Hi,

"I don’t think I have PA"

Did GP test you for PA?

Have you had an Intrinsic Factor Antibody test? This can help to diagnose PA but IFA test is not always reliable and it is still possible to have PA even if IFA result is negative or normal range.

See flowchart link below in UK B12 Documents which outlines when PA and Antibody Negative PA can be diagnosed in UK.

What does your GP think is causing your low B12?

Has GP excluded possibility of diet as a cause? Do you eat plenty of B12 rich food eg meat, fish, dairy, eggs, shellfish, foods fortified with B12?

Vegan and vegetarian diets may be a risk factor for developing B12 deficiency.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Is there a history of auto-immune conditions in your family?

This can increase a person's chances of developing an auto-immune condition. PA and Coeliac disease are auto-immune conditions. It's not uncommon for people on this forum to have Thyroid Disease. Symptoms of thyroid disease can overlap with those of b12 deficiency.

I would suggest putting any thyroid results on Thyroid UK forum on HU. In UK, doctors often only test TSH level which won't give a full picture of thyroid function.

Thyroid Blood tests

thyroiduk.org/tuk/testing/t...

thyroiduk.org/tuk/testing/i...

Have you had tests for

a) Coeliac disease?

In UK, two first line tests are recommended.

1) tTG IgA

2) Total IgA

My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coelaic disease.

NICE guidelines Coeliac Disease (2015 version)

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

NICE guidelines above suggest anyone with unexplained B12 deficiency or folate deficiency or iron deficiency should be tested for Coeliac disease.

Coeliac Blood tests

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

b) H Pylori infection?

patient.info/health/dyspeps...

UK B12 documents

If you're in UK, I'd suggets reading all of these plus more info in pinned posts on forum including useful summary of mainly UK b12 documents in third pinned post.

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...

"Started B12 jabs and had my 1st on Thursday got another 5 to go over 2 weeks. "

UK B12 treatment

For B12 deficiency without neuro symptoms.....

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

For B12 deficiency with neuro symptoms.....

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

Do you have any neuro symptoms eg tingling, numbness, pins and needles, tinnitus, tremors, memory problems, balance issues plus others?

If yes, my understanding (I'm not medically trained) is that UK patients with b12 deficiency with neuro symptoms should be on neuro treatment regime outlined above.

It's vital that patients receive correct level of treatment. If you are on 6 loading jabs followed by 3 monthly injections that may not be enough if you have neuro symptoms.

Untreated or under treated B12 deficiency can lead to further deterioration including possible spinal problems.

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

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

Neurological Consequences of B12 Deficiency

PAS news item on Neuro Consequences of PA

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, available to PAS members only.

pernicious-anaemia-society....

Letters to GPs about Under Treatment of B12 Deficiency with Neuro Symptoms

b12deficiency.info/b12-writ...

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.

PAS (Pernicious Anaemia Society)

If you think PA or Antibody Negative PA is a possibility then may be worth joining and talking to PAS. lots of useful info on PAS website. Not all PAS members have a diagnosis of PA, partly because it can be very difficult to get a diagnosis of PA...can take some people years to get a diagnosis.

PAS can sometimes intervene on behalf of PAS members by writing letters (see Martyn Hooper's blog) and at very least can pass on useful info.

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

PAS support groups can be a very useful source of info on helpful GPs in area and how people cope if NHS treatment is not enough for them.

PAS info for Health Professionals

There is a section on PAS website for health professionals and they can join PAS for free as associate members. Perhaps this might interest your GP?

pernicious-anaemia-society....

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

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/

Most important thing I learned...

was to always get copies of all my blood tests.

Access to Medical Records (England)

nhs.uk/NHSEngland/thenhs/re...

nhs.uk/chq/pages/1309.aspx?...

I learnt to do this after being told everything was normal and then finding abnormal and borderline results on the copies. Some people on forum get a complete set of medical records...can be very interesting to see what has been written by doctors in the past. Maximum cost of set of medical records in UK £50. Maximum cost of set of blood test results £10.

Some UK GP surgeries have on-line access to a summary of test results/records but this is just a summary and may not have all the info wanted. It is free in UK to view records but might require appt with practice manager.

I hope you get the help you need.

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Once thing i've learned on this Forum over the years is; whatever you are experiencing; you're not alone.

I was diagnosed with P.A. in 1994 and have had mild to severe back problems since my late teens. But a number of years ago I went through a stage of having a very strange feeling regarding my back and on one thigh. It covered an area not much bigger than a 50 pence and it would feel either very hot or freezing cold or as if I was being touched, or stranger still, was the feeling that it was wet; as if I had been splashed with water or a large drip of water had landed on me. I was forever feeling to see if there was something there, but there wasn't. I was referred to a Neurologist but told it was neuropathy and just to live with it. These sensations disappeared but I developed intermittent complete numbness of my left thigh. This I was told could be permanent neurological damage from my P.A. or as a result of a previous herniated disc. I find it very disconcerting when it happens, but its now just another symptom added to an ever increasing list that comes with my P.A.

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The symptoms can be so weird! One of mine was a sensation of having hot water poured over one foot. It was quite pleasant, but I did check every time that it wasn't actual water! I'd never have gone to the GP with that - it sounds quite ridiculous!

I also get eye twitches in my left eye when I'm due a jab - the kind when you're convinced everyone can see it happening but they can't.

If you always sit cross legged, 007carra, I'd have thought it's unlikely to be causing pins and needles. I wonder if that's a B12 symptom too?

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