I'm new to this

[Robert50]

Hi my first week of having 6 injections ,for b .12 so I new at this so I reading what I can.

[clivealive Forum Support]

Hi Robert50

Have you any idea what your diagnosis is? Vitamin B12 deficiency or Pernicious Anaemia?

Has your doctor said anything to you about your Folate level?

Were you given any explanation of why you are being given the B12 injections?

What symptoms do you have?

Symptoms of B12 deficiency tend to develop slowly and may not be recognised immediately. As the condition worsens, common symptoms include:

Weakness and fatigue

Light-headedness and dizziness

Palpitations and rapid heartbeat

Shortness of breath

A sore tongue that has a red, beefy appearance

Nausea or poor appetite

Weight loss

Diarrhoea

Yellowish tinge to the skin and eyes

Do you have any of the above?

Are you worried or stressed about having the injections?

I'm not a medically trained person but I have had P.A. (a form of B12 deficiency) for more than 45 years and I'm still "clivealive" at over 75

[Foggyme Administrator in reply to clivealive]

clivealive , we have been doing simultaneous typing (oops, do they still call it that 🤔).

[Robert50 in reply to clivealive]

hi my doctor has not said anything about why I'm taking B 12, I got one more injection on Monday can you please tell me what I should ask him many thanks .

[Foggyme Administrator]

Hi Robert50. Hello and welcome. Sorry about you diagnosis but pleased that you've started on your B12 injections 😀. Being diagnosed can be quite a shock...but perhaps a relief too, because it 'explains' why you may have been feeling ill - or maybe you're one of the lucky few who don't have too many symptoms 😉.

You've come to the right place for support and help. Lots of lovely folks here who pop in and out to help other deficients.

Just so you are aware...some GP's are not very well informed about B12 so doing reading and getting well informed about B12 deficiency is exactly the right thing to do.

A few tips to get you started:

There are two treatment regimes for B12 deficiency:

For those without neurological symptoms: 6 x loading dose injections and then injections every three months.

For those with neurological symptoms: 6 x loading doses and then injections every other day until no further improvements - sometimes for many months.

I'm mentioning this because some GP's do not know about the neurological regime and getting the right treatment gives the best chance of getting and staying well. If,you don't think you're on the right regime, we can help with information and guidelines that you can show to your GP.

Also worth noting that some people need more frequent injections than are often prescribed by the NHS (you'll know you're one of those people if your symptoms return before your next injection is due). If that happens, pop up a post and we can offer suggestions on how to deal with that.

Also - some GP's mistakenly stop B12 injections if they discover that serum B12 levels are high, or very high. After B12 injections, levels should be high so this should never be used as a reason to stop injections.

GP's often say blood results are 'normal' when they're not (being at the bottom - or the top - of a reference range is often not good enough for people with B12 deficiency so....if you're ever not sure, get copies of your blood results and post them in the forum (together with the reference ranges) and people can help,with interpretation.

Just wondering if your GP has checked your folate levels. This is important because B12 and folate work together so if folate levels are deficient or low, the body cannot utilise B12 properly. Good idea to ask your GP to check if they haven't already done so.

People with B12 deficency often have absorption problems so can develop other deficiencies too - ferritin (one of the markers for iron deficiency anaemia) and vitamin D are two of the other main culprits - deficiencies in these can make you feel quite ill so worth getting these checked as well - if not done already.

Hope your GP has or is trying to work out why you have B12 deficency - lots of causes and a few can be remedied (for instance if the deficiency is caused by medications or infection by the gastric bacteria heliobactor pylori).

So...that's about it for now. Good luck with the loading doses, let us know how you get on...and pop up a new post whenever you need support or advice.

Oh...and...as you mentioned reading...going to finish by posting some links that will give you more information about B12 deficiency and pernicious anaemia. The information will also help you to,understand what your GP should (and should not 😉) be doing to help you.

Might look like a lot of reading but most documents are only one page long (two bigger ones - one has useful summary sections - but just eat them in chunks 😀) and browse through the rest as and when.

Here come the links...

b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)

evidence.nhs.uk/formulary/b... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

pernicious-anaemia-society.... (PAS Symptom Checklist)

stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)

onlinelibrary.wiley.com/doi... (British Committee for Standards in Haematology (BCSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections)

cks.nice.org.uk/anaemia-b12... (NICE Guidelines Treatment of B12 / Folate Deficiencies)

onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections)

stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)

stichtingb12tekort.nl/weten.... (B12 Deficiency and Intrinsic Factor – Can Be Negative and Still Have PA)

stichtingb12tekort.nl/weten... (B12 Deficiency and Neuropsychiatric Symptoms)

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[Robert50]

Thank you for your replys I was told I have pernicious anaemia? NOT sure what this means Robert 50

[Foggyme Administrator in reply to Robert50]

Hi Robert50. Just spotted your query about pernicious anaemia...it looks like you put in a new reply to,your own post...so nobody was notified of your new entry (and hence, no replies).

Here's some information about pernicious anaemia...to get you started:

pernicious-anaemia-society....

Hope it helps...put up a new post if you have any more questions

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P.s. When you reply to someone in a thread, click the green submit reply button that's at the end of that reply - the person who you are replying too will then receive a notification and will be able to reply, if necessary)

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