Vitaminb12 shots

[Tjp30]

Hi I am lacking vitamin b12 and have my first jab on Wednesday my doctor said I need 5 shots. Once I’ve had these 5 will everything go back to normal ?

[Nackapan]

Usually the loading doses is 6 injections over 2 weeks in the UK.

Depends on your symptoms and how long you've been deficient.

Loading doses made me alot worse before any benefits

Some if very vague symptomscrespond quickly tohigh doses of b12

Especially if the cause is dietary so tiu can process it okay.

What are your symptoms was your b12 very low?

Or are you being treated on symptoms rather than numbers?

[Tjp30 in reply to Nackapan]

Honestly I have no idea doctor wasn’t very helpful just said I had toBook some vitamin b12 shots. My symptoms are fatigue bad heads dizziness pins and needles blurry vision sometimes muscle weakness and peeing a lot more

[Nackapan in reply to Tjp30]

Also ask if you had an Intrinsic factor test This shows up about 50% of those with PA.

If negative fies nor rule it out.

If your headaches or other symptoms persist ask for wmevery other day to continue

I had to do this.

Not easy but get them to look at bnf guidelines

I Hope you improve

[Tjp30 in reply to Nackapan]

Thank you

[Nackapan in reply to Tjp30]

Just thought gge blurry vision and peeing alot more ......get your blood sugars tested as well If not done .

[HeartyGilly]

You will need to continue the jabs once there is no further improvement in your symptoms after the loading doses. Every 8 or 12 weeks.

[Gambit62 Administrator]

Tjp30, do you know what caused your B12 deficiency, ie is it dietary or an absorption problem. B12 is only found in animal products so if you eat very little or no meat/fish/dairy/egg then your deficiency is most likely to be dietary.If you do eat animal products then its most likely you have an absorption problem and PA is the most common absorption problem but not the only one. The treatment for absorption problems is B12 injections for life, though some people can manage with high dose oral.

As you have neurological issues your treatment should be more aggressive.

Treatment regimes vary from country to country - if you are in the UK then the norm would be 6 injections over 2 weeks or (if you have neurological symptoms) until your symptoms stop improving and then maintenance doses every 2-3 months. The US uses a different type of cobalamin and the norm would be some sort of loading regime followed by maintenance doses monthly, but there isn't a national regime in the US. Australia and NZ tend to follow the UK, Canada tends to follow US.

Many people do find that the periods for maintenance doses is too long for them.

Suggestion: write down your symptoms and keep a diary of how these vary over time.

Make sure your GP is aware of the BCSH guidelines which can be found here, as these give a good breakdown of the various tests that can be done to establish the cause of a B12 deficiency and the also the limitations of those tests and the importance of using symptoms as a guide.

onlinelibrary.wiley.com/doi...

You could also point them at the area of the PAS website specifically aimed at helping medical professionals improve the diagnosis and treatment of PA (and other B12 absorption problems)

pernicious-anaemia-society....

[Sleepybunny]

Hi,

A few links that might be of interest

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

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

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some members not in UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring and an online contact form.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 institute - Netherlands

(has useful lists of symptoms and causes)

b12-institute.nl/en/home-2/

Films and videos about PA and B12 deficiency

PAS conferences

pernicious-anaemia-society....

Films about b12 deficiency

b12deficiency.info/films/

Some doctors' understanding of B12 deficiency is not as good as it should be.

Misconceptions (wrong ideas )about B12 deficiency

B12 article from Mayo Clinic in US

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

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Misconceptions about a B12 deficiency

(From Dutch B12 website)

stichtingb12tekort.nl/engli...

UK blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

UK treatment guidance has changed since this blog post was written.

Diagnosis and Treatment Pitfalls(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

Do you mind me asking which country you are in? Patterns of treatment vary between countries and type of B12 used in treatment can vary.

If you're in UK, there's a lot more info I can post. I'm in UK.

I'm not medically trained.

[Tjp30 in reply to Sleepybunny]

I’m fromNewcastle

[Beginner2]

5 injections of B12. There are only two counties in England that give 5 injections, Gloucestershire being one, although the recommended amount are 6. Gloucestershire also seem to 'do their own thing' in the follow up. You may need help from here after you have your 5.

[Tjp30 in reply to Beginner2]

They’ve only booked me in for 2 this week starting Wednesday and 3 the following week said they only ever give 5 🤦🏽‍♀️

[Sleepybunny in reply to Tjp30]

In UK, people with B12 deficiency usually get a set of loading injections close together at start of treatment then maintenance injections every 2 or 3 months after loading injections are finished.

See BNF hydroxocobalamin link in next reply if in UK.

How often will you be getting B12 injections after your loading injections are finished?

[Tjp30 in reply to Sleepybunny]

My doctor just said to book b12 injections so I rang receptionist and she said we only give 5 loads so starting them on Wednesday then Friday then Monday Wednesday Friday. She then said to give it 3 month and see how I felt but I have muscle weakness pins and needles needing to pee all the time (sometimes not making it to pee) fatigue bad heads sometimes feel light headed. Dry skin brittle hair and nails 😔 the list goes on x

[Hidden in reply to Tjp30]

I’m from Manchester and I had 6 ‘loading’ injections over a 2 week period for my first lot. I’m now on one injection every 12 weeks. I feel loads better but it was a slow process, it didn’t happen straight away after the loading injections. But I’m now on my 8th injection since December & most of my symptoms I had before have gone, Best of luck

[Sleepybunny]

If you're in UK, following info may be useful.

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

b12deficiency.info/what-to-...

Unhappy with Treatment (UK info)

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about being under treated for B12 deficiency when neurological symptoms are present.

Point 5 in above link is about having the symptoms of B12 deficiency with a normal range result for serum (total) B12.

It's vital to get adequate treatment for B12 deficiency.

If treatment is inadequate then there is an increased risk of developing permanent neurological damage.

PAS

PAS website has useful leaflets/articles and a page for health professionals that your GP may find useful (especially if you're in UK).

Leaflets/articles

pernicious-anaemia-society....

Page for Health Professionals

pernicious-anaemia-society....

UK B12 documents

NHS article about B12 deficiency (simply written)

nhs.uk/conditions/vitamin-b...

BSH Cobalamin and Folate Guidelines

(aimed at health professionals - GPs may find this helpful)

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

Summary of BSH Cobalamin and Folate Guidelines (main points from above document)

pernicious-anaemia-society....

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

BNF link below outlines two patterns of treatment recommended for B12 deficiency in UK.

1) for those without neuro symptoms

2) for those WITH neuro symptoms

BNF Hydroxocobalamin

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

NICE stands for National Institute for Health and Care Excellence (in UK).

CKS stands for Clinical Knowledge Summary

NICE CKS B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

New NICE guidelines

There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023.

nice.org.uk/guidance/indeve...

If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment(over 40 pages of info).

Local B12 Deficiency Guidelines

Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency.

Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.

Some local guidelines have been posted on forum so

1) try a search of forum posts using terms "local guidelines"

2) try an internet search using "name of CCG/Health Board B12 deficiency guidelines"

3) submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.

I hope you are not in Gloucestershire as this area of UK does not have a good reputation on this forum as to how B12 deficiency is managed.

Blog post below from B12 Deficiency Info website discusses treatment for B12 deficiency in Gloucestershire.

b12deficiency.info/gloucest...

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

[Sleepybunny in reply to Sleepybunny]

These might be your local guidelines but please check for yourself...

North of Tyne APC

APC means Area Prescribing Committee

The guidelines were amended in April 2022 and a review of the guidelines is due in 2023.

Management of B12 deficiency

northoftyneapc.nhs.uk/wp-co...

Apologies as not sure if above link works. Let me know if it doesn't.

[Sleepybunny in reply to Sleepybunny]

On the right hand side of the first flowchart (for people with low B12 in Newcastle/Northumbria) it refers GPs to BNF.

See BNF hydroxocobalamin link in one of my replies.

Have also started a new thread on these guidelines. Might get other people in that area commenting.

[Tjp30 in reply to Sleepybunny]

This is what has come up abnormal from

Blood test

Serum vitamin B12126 ng/L

150 - 1000

Abnormal

Total white cell count

Result

12.26 x10*9/L

Normal range

4.00 - 11.00

Abnormal

Monocyte count

Result

0.86 x10*9/L

Normal range

0.20 - 0.80

Abnormal

[Tjp30 in reply to Tjp30]

Serum vitamin B12Result

126 ng/L

Normal range

150 - 1000

Abnormal

[Sleepybunny]

"needing to pee all the time"

Issues with urination can be a neurological problem.

Dizziness pins and needles are usually considered to be neurological.

Do you have other neurological symptoms?

Have a look at the symptoms lists below.

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

cks.nice.org.uk/topics/anae...

b12-institute.nl/en/symptom... (B12 Institute Netherlands)

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

List of Symptoms

Has your GP got a list of all your symptoms, especially any neuro symptoms and definitely any that affect your spinal area?

Worth drawing GPs attention to any neuro symptoms in conversations and any letters you write to GP. The risk of developing permanent neurological damage from B12 deficiency is increased if treatment is inadequate.

"She then said to give it 3 month"

If your GP is planning to give you 5 loading injections followed by maintenance injections every 3 months then she is not using the BNF guidance for treating people with B12 deficiency WITH neuro symptoms. See BNF hydroxocobalamin link.

BNF suggests the following pattern of treatment for those with B12 deficiency with neuro symptoms

A B12 loading injection every other day for as long as symptoms continue to improve then a maintenance injection every two months.

There is no set time limit in BNF as to how long the every other day loading injections can continue for. It could be weeks or even months of them. If improvement continues so should the every other day injections.

The treatment she is proposing seems closer to the BNF treatment for those with B12 deficiency without neuro symptoms.

Worth drawing her attention to what is in BNF. She can find the info online (maybe give her a copy) or in her BNF book Chapter 9 Section 1.2

See Point 1 in the letter writing link in my other reply with gives a letter template for writing to GP if under treated for B12 deficiency with neuro symptoms.

Referrals

With neuro symptoms present, have you been referred to a neurologist?

NICE guidelines neurological referrals

nice.org.uk/guidance/NG127

Have you been referred to a haematologist?

If GP is reluctant to refer ( referrals are expensive) then maybe you could ask your GP to write to a haematologist for advice on how to treat you.

If gut symptoms are present, have you been referred to a gastro enterologist?

NICE - when to refer B12 deficient patient

cks.nice.org.uk/topics/anae...

I wish I could say that being referred guarantees better treatment but there is a lack of knowledge about B12 deficiency among some specialists just as in some GPs. Fingers crossed you get a good one.

Best piece of advice I ever got was to always get access to or copies of my blood test results.

Accessing Health Records (England)

patients-association.org.uk...

Some people access test results and medical records with NHS app.

nhs.uk/nhs-app/nhs-app-help...

Retention of UK medical records

bma.org.uk/advice-and-suppo...

Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.

If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place.

What does your GP think is causing your B12 deficiency?

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Next link about causes is from a Dutch B12 website

b12-institute.nl/en/causes-...

Has GP discussed your diet?

May be worth writing out a typical week's diet, food and drink to discuss with GP.

Have you been tested for PA?

Testing for PA

pernicious-anaemia-society....

Have you been tested for coeliac disease?

Guidelines below suggest testing anyone with unexplained B12, folate or iron deficiency.

NICE guidelines Coeliac Disease

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

More on Coeliac UK website

coeliac.org.uk/home/

Tested for H Pylori infection?

H Pylori infection

patient.info/digestive-heal...

Any exposure to nitrous oxide?

Nitrous oxide is a gas that is sometimes used in pain relief and anaesthesia.

It's in gas and air mix , used as pain relief in labour.

Nitrous oxide inactivates B12 in the body.

Nitrous Oxide

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

NICE guidelines Nitrous Oxide ( see side effects section)

bnf.nice.org.uk/drug/nitrou...

Any chance of internal parasites eg fish tapeworm?

There are other parasites that can be associated with B12 deficiency.

One potential sign of an internal parasite is an increase in eosinophils, a type of white blood cell. Eosinophil result can be found on Full Blood Count results.

Medicines/drugs

Has GP reviewed any medication you are on?

Some drugs such as metformin, a diabetes drug, PPI drugs and some anti- epileptic drugs have been associated with low B12 in some studies.

Concerns about medication should always be discussed with your doctor. Local pharmacist may also be helpful.

Have your folate, iron and Vitamin D levels been checked?

Forum members often report deficiencies in these as well as B12.

Full Blood Count (FBC) would be useful too.

Have you had any thyroid tests?

It's quite common for forum members to also have thyroid issues.

In UK, GPs often only test TSH which won't give a full picture of thyroid function. There are other thyroid tests that can be done.

Thyroid tests

thyroiduk.org/getting-a-dia...

I suggest putting any thyroid results you have on Thyroid UK forum on HU.

Lots more info in threads I linked to at bottom of my third reply.

[QUE6T-33 in reply to Sleepybunny]

How long do you stop taking B12 supplement before an Active B12 test ?