In the middle of making decisions - Pernicious Anaemi...

Pernicious Anaemia Society

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In the middle of making decisions

Kaw142
Kaw142

Hi I’m 53 a single mum of a 16 yr old and also a self employed gardener. I’m in the middle of a 2 week course of b12 injections from my doctor.

Iv been feeling ill for quite a few month but carries on pushing myself until in the end I had to go for blood tests as I was shaking and energy levels were zero aswell as I have had hair thinning dry skin and a touch of depression which I had put all of these signs down to losing my mum a couple of years ago . Apparently I am dangerously low of b12 .

What happens now ??

Kerry x

8 Replies
clivealive
clivealiveForum Support

Hi Kaw142

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Initially, replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Haemoglobin.

Both iron and folate may be needed so please have these levels checked by your doctor.

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.

Kaw142
Kaw142 in reply to clivealive

Thank you for so much for your advice . I’m pretty scared at the moment as feel totally lost and wiped out. I feel that my speech is slurring but friends have said I sound ok just look spaced out. Another injection tomorrow , half way mark xx thank you I’m glad I joined this group

clivealive
clivealiveForum Support in reply to Kaw142

My levels must have been near enough zero when I eventually got my P.A. diagnosis in 1972, 13 years after the removal of two thirds of my stomach in 1959 at the age of17.

Then aged 31 with two daughters under six and with a wife with heart problems my doctor gave me two years to live unless I ate raw liver three times a day or had B12 injections for the rest of my life.

I'm still "clivealive" now 77 years old and due my next injection next Monday :)

Clive's reply is pretty comprehensive, but I just wanted to say hello, and welcome, and that there is loads of good advice on here. I'm also the single mum of a sixteen year old (with an extra two as well :)) and low B12 is just utterly rubbish when life is so busy, so hugs to you.

Have the loading jabs and see how you feel. And don't forget that if it's not enough, self-injection might be an option. Now you're diagnosed, at least you can start treating it and getting yourself feeling human again x

Kaw142
Kaw142 in reply to spacey1

Thank you you’ve made me feel that I’m not alone in all of this. It’s very scary as I struggle daily at the mo. Fuzzy head and my decision making is awful. My doc didn’t say much after my blood results except that my b12 didn’t really exist in my body so I much be very low xx will keep you posted and thank you once again xxx

Welcome to the forum and so glad your GP has started you on treatment. Just to add that with such low B12, loading doses may not be sufficient, especially as you have an active job . I hope these links will explain clearly why adequate treatment and not relying on blood levels alone to measure continued treatment is so important initially:

stichtingb12tekort.nl/weten...

also

The latest BMJ research document summary below, (full document behind a paywall) states that there is no reliable test and, (bottom of page 4 ' under, 'How is Response to treatment assessed'), once treatment is given, blood levels will inevitably increase but it is the clinical condition of the patient that is important:

"Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment, and retesting is not usually required."

bmj.com/content/349/bmj.g5226

This is another helpful link with information:

b12deficiency.info/what-to-...

I hope you begin to feel better soon Kaw142

I rang my doctors today to ask what level my b12 was when they took bloods last week. They said the level is 130 !!

Hi,

Some B12 info that may be of use.

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

What does GP think is causing low b12?

Do you eat plenty of B12 rich food eg meat, fish, shellfish, eggs, dairy, foods fortified with B12?

If yes then diet as cause is less likely and it becomes more likely that there is an absorption problem.

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

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

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

UK B12 documents

If you're in UK, I'd recommend reading all of these documents/articles.

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...

More B12 info in pinned posts including useful summary of B12 documents.

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.

PA

Have you been tested for PA (Pernicious Anaemia)?

In UK, people with suspected PA are usually given an Intrinsic Factor Antibody (IFA) test. IFA test is not always reliable and it is still possible to have PA even if IFA result is negative or normal range.

Flowchart link above outlines when PA or Antibody Negative PA can be diagnosed in UK.

PAS (Pernicious Anaemia Society)

If PA is suspected may eb worth joining and talking to PAS.

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info

b12deficiency.info/

B12d.org

b12d.org/

UK B12 Blogs

May be relevant stories on these.

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-...

Coeliac Disease

Can lead to B12 deficiency due to effect on gut. In UK, NICE guidelines on Coeliac disease recommend that anyone with unexplained B12, folate , iron deficiencies should be tested for 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 Coeliac disease.

NICE guidelines Coeliac Disease (2015 version)

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

Coeliac blood tests

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

H pylori infection tests?

patient.info/health/dyspeps...

Best advice I ever got was to always get copies of all my blood test results. Some forum members get a complete set of medical records.

Access to Medical Records (England)

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

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

Neurological Symptoms

Do you have any neuro symptoms eg tingling, pins and needles, tinnitus, tremors, memory problems, balance issues plus other possible neuro symptoms? See B12 deficiency symptoms lists.

If yes to neuro symptoms

1) Has your GP contacted a haematologist? Or have you been referred to a haematologist?

NICE CKS link above recommends GP should contact a haematologist for patients with

2) Have you been referred to a neurologist? It's important to exclude other possibilties for neuro symptoms.

3) "in the middle of a 2 week course of b12 injections"

UK b12 treatment for b12 deficiency without neuro symptoms is .....

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

I suspect GP is using the above pattern of treatment.

UK B12 treatment for b12 deficiency WITH neuro symptoms is .....

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

A lot of UK forum members struggle to get adequate B12 treatment.

There is a window of opportunity to put things right with treatment before there is a risk of permanent neuro damage so it's worth fighting for correct level of treatment.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

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

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

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

Letters to GP about Under treatment of b12 deficency WITH neuro symptoms

b12deficiency.info/b12-writ...

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/

GP/patient relationship

Many forum members report difficult experiences with GPs. B12 deficiency is not always as well-understood as it could be by GPs and specialists. My advice is to be well-prepared for any appointments. Some people take someone supportive with them to appts. Even better if person taken has read up about b12.

I am not medically trained.

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