Recently diagnosed with b12 deficiency - Pernicious Anaemi...

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Recently diagnosed with b12 deficiency

Showgem
Showgem
8 Replies

Hi, I'm new here.

I've had my 2 week loading doses of b12 after being tested for the first time ever my level was very low at 58, the last one was 6 days ago.

I haven't felt much better, during the first week I felt awful, even worse than usual. One thing that has really improved is my tongue which had been really sore and swollen. The problem with my feet and hands going numb at night was starting to improve with the 5th and 6th doses but it's been only 6 days since my last injection and already it's getting worse again. I've been told I'll have the injections every 12 weeks but I feel that all my symptoms will be back long before then.

This week I've had acne which I haven't had for years, I'm in my late 60s. I also had a very itchy rash on my head and face for a couple of days and keep feeling dizzy. I'm assuming these problems are a reaction to the injections, I was also low in vitamins D and have been given capsules for that.

The other thing that flagged up was MCH at 32.5 but the full blood count said normal-no action. I have had anaemia for many years for which I've been prescribed iron tablets, in the past I've been given iron injections, last year I had an iron infusion and for the first time my ferritin levels haven't been low.

Looking at the symptoms on here I have had almost all the symptoms of b12 deficiency for a very long time.

Should press the doctor for more b12 injections or wait and see how it goes?

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clivealive
clivealiveForum Support

Hi Showgem The N.I.C.E guidelines state:

For people with neurological involvement

Seek urgent specialist advice from a haematologist.

Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following:

Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.

The important bit is underlined. This does not mean until all the symptoms have "gone away" and only you will know when they stop getting better.

Ask your doctor to resume loading doses

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

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

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.

A wiser person than I has commented previously:

"The pimples/acne, is likely to be caused by microbes on your skin reacting to the additional B12 by producing substances that your skin is then reacting to. In theory this could be resolved by use of a good skin wash. You might have better luck talking to your pharmacist and seeing what they can recommend prior to your next maintenance shot - though there is always a chance that it was something that won't recur"

Apart from your age has your doctor established why you became so B12 deficient?

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

I wish you well.

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Showgem
Showgem
in reply to clivealive

Thank you for this very helpful information

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Showgem
Showgem
in reply to clivealive

I've just visited my GP surgery to see another doctor as the doctor who diagnosed my b12 deficiency only works part time and is not available this week.

He wants me to have another b12 test tomorrow to see if my levels are topped up enough because if they are he said further b12 injections earlier than my next 3 month appointment wouldn't be necessary. He said as it took a long time for me to get a low b12 (58) I can only expect the neurological problems to take a long time to heal.

From what I've read on here taking blood so soon, only 8 days after the last of my 6 loading injections is pointless as they are bound to be high, therefore I am likely to be told that don't need more b12.

I have booked an appointment with the original doctor for next week. I hope to find out the results of further blood tests I had a couple of weeks ago, I know one of them was for antibodies. One of the nurses who does the injections has informed me it was positive but that I will have to wait until my appointment next week for the doctor to explain the results to me.

Do you think I should just cancel tomorrow's appointment for the b12 test as I can't see that it is going to be of any help to me in getting more injections.

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Sleepybunny

Hi,

I've assumed you're in UK.

B12 deficiency treatment can vary from country to country.

Recommended UK treatment B12 deficiency

1) Without neuro symptoms - 6 loading jabs over 2 weeks then a jab every 2 or 3 months.

Does GP know BNF guidance changed recently? Used to say jab every 3 months

pernicious-anaemia-society....

2) With neuro symptoms - a B12 loading jab every other day for as long as symptoms continue to get better then jab every 2 months.

"been told I'll have the injections every 12 weeks but I feel that all my symptoms will be back"

If you're in UK and have/ or had neuro symptoms, my understanding is that you should be on second treatment pattern. See BNF, NICE CKS and BSH links below.

You appear to have been put on first pattern of treatment, for those without neuro symptoms.

"feet and hands going numb at night"

Numbness would usually be considered as a neuro symptom.

Do you have any other neuro symptoms?

Tingling

Pins and needles

Tinnitus

Tremors

Restless Legs

Migraine

Memory problems

Balance problems

Brainfog

There are many other possible neuro symptoms.

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...

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 most 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. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

What does GP think is causing the B12 deficiency?

Have you been tested for PA (Pernicious Anaemia)?

In UK, test for PA is Intrinsic Factor Antibody test. IFA test is not always reliable and it is still possible to have PA even if IFA result is negative.

Some UK GPs may not be aware that it is possible to have Antibody Negative PA.

If you think PA is a possibility, probably worth joining and talking to PAS, They have a helpline for members.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

Has diet been excluded as a possible cause?

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

If yes to B12 rich diet then it becomes less likely that B12 deficiency is due to diet and more likely that there is an absorption problem in gut eg PA, Coeliac, H Pylori and other possibilities.

Have you been tested for Coeliac disease?

If yes, were both recommended tests done?

1) tTG IgA

2) Total IgA

tTG IgA test checks for a particular antibody to gluten.

Total IgA test checks for which patients have IgA deficiency. Patients with IgA deficiency will not make the antibodies to gluten that tTG IgA test checks for, even if they have Coeliac disease. These patients will need alternative tests for Coeliac disease.

NICE guidelines Coeliac Disease (2015 version) recommends that in UK, people with suspected Coeliac disease have both tests.

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

Coeliac Blood Tests

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

Have you been tested for H Pylori infection?

patient.info/health/dyspeps...

Any exposure to nitrous oxide?

gov.uk/drug-safety-update/n...

Any chance of internal parasites?

Fish tapeworm can lead to severe B12 deficiency. There are other parasites such as Giardia Lamblia that are associated with B12 deficiency.

B12 Deficiency Info website

b12deficiency.info/

UK B12 Blogs

There may be stories on these blogs that are relevant to your situation.

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

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

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

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

If you have neuro symptoms, have you been referred to

1) a neurologist?

2) a haematologist?

NICE CKS link suggests that GPs should seek advice from a haematologist for patients with B12 deficiency WITH neuro symptoms. Has GP done this?

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

b12deficiency.info/what-to-...

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-...

Iron Studies

labtestsonline.org.uk/tests...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

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

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

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

hdapatientcaretrust.com/

More B12 info in pinned posts on this forum. Worth looking at.

I am not medically trained.

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Showgem
Showgem
in reply to Sleepybunny

Thank you for replying, I have all of these except the migraines and tremors are very slight in just my hands and not all the time. I will try to see a doctor asap.

I have fibro and asthma and for a long time was putting most of my symptoms down to this.

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Sleepybunny
Sleepybunny
in reply to Showgem

I think your best bet may be to contact PAS before next appointment. They can sometimes intervene on behalf of their members and at very least can pass on useful info to show GP.

PAS membership costs about £20 for a year's basic membership.

pernicious-anaemia-society....

B12 deficiency can often be misdiagnosed as other conditions eg ME/CFS/Fibro

martynhooper.com/2018/02/10...

b12deficiency.info/misdiagn...

Blog post showing how PAS can support those seeking PA diagnosis

martynhooper.com/2017/06/24...

If you query your treatment with GP, go well prepared as sadly B12 deficiency is not always as well -understood as it could be among GPs/specialist doctors.

1) Do you have someone supportive to go with you? Even better is they have read about B12 deficiency/PA etc. It's my impression that GPs are sometimes kinder and more willing to listen if a witness is present.

2) My personal preference was to put queries about treatment into a brief, polite letter. I used to include symptoms, relevant family history, test results, extracts from UK documents/articles.

In UK, letters to GPs are supposed to be filed with a patient's medical records. I feel letters are less likely to be ignored than things said to GP/info on photocopies handed over.

"I have all of these except the migraines and tremors are very slight "

Does your GP have a list of all your neurological symptoms?

Help for GPs

1) PAS website has section for health professionals. They can join PAS for free.

pernicious-anaemia-society....

2) I believe PAS has access to a GP who understands PA. It may be possible for your GP to speak to this GP.

3) I gave my GPs a copy of book "What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

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Showgem
Showgem
in reply to Sleepybunny

Thank you for all your information. I will be better prepared when I see the doctor next week about the results of the blood tests. The trouble is you don't get much time and I have other health problems to discuss as well and they're always running late.

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Sleepybunny
Sleepybunny
in reply to Showgem

Have you asked if you could have a double appointment?

Might also be worth writing a short , polite letter outlining any concerns and ensuring GP gets this before appointment as gives GP time to do some B12 homework and avoids any face to face confrontation. See letter writing link in my first post on this thread.

Words of caution:

Some GPs find it hard to cope with assertive patients. GP/patient relation ship may be affected. I gave up worrying about this when I realised that if I didn't get treatment I was headed for dementia and neurological damage.

GPs usually have a BNF book on their desk/bookshelf. If GP refers to BNF book to check recommended treatment for B12 deficiency with neuro symptoms, they need to look at Chapter 9 Section 1.2

Their copy of BNF may not be up to date with recent change to B12 treatment. See BNF link below.

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

Local NHS B12 guidelines

Some parts of UK use local guidelines on B12 deficiency. Some of these local guidelines are outdated and may not reflect what is in national guidelines. Might be worth tracking down local guidelines and comparing them with BSH Cobalamin guidelines, BNF, NICE CKS etc

Local UK guidelines might be found by

1) An internet search

2) A search on local NHS website

3) A Freedom of Information request to local NHS website

May be worth having a copy of BSH Cobalamin and Folate Guidelines with you.

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