New to me

Hello!

This is all a bit new to me. But my heart sinks seeing some of the problems other people have had. Also because of the difficulty I have had previously getting diagnosed with hypothyroidism. In fact when I felt tired in January I originally thought it was that, but blood tests showed low Vitamin D and Vitamin B12. I was given Vitamin D caps, advised that I may not be able to absorb Vitamin B12 and to come back in 3 months to have my bloods done again.

Easter weekend I noticed I was clumbsy and irritable so made another GP appointment with different doctor at the surgery. He said when I saw him that Vitamin B12 should have been followed up. While I was waiting to get results through I started getting the sensation of being jabbed by a hot needle. I am worried about this.

I phoned Tuesday last week and was told I would need injections which I started that day. However I don't really feel I have been told much or given much information.

6 Replies

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  • Hi Panpal

    Sounds like your B12 deficiency could be PA based on the fact you mention an injection from the surgery. However it doesn't make sense as normally you would have been diagnosed with PA following the relevant tests and should be on what is called loading doses until any neurological symptoms stop ie every other day but not an injection then wait for a diagnosis as any further B12 tests would be skewed. Take along the Nice guidelines available from the forum and keep them in your pocket incase you need to refer to them.

    I would suggest also that you ask about your folate levels as you should be taking folate once you have started your injections.

    Hopefully you will have some answers ASAP.

    Mark

  • Thanks Mark. The anitbodies test was mentioned, unfortunately my concentration and memory has not been functioning that well.

  • Please look through the pinned posts - there is lots of information there about what B12 deficiency is, what the symptoms are and how it should be treated. You may also want to think about joining the PAS itself

    pernicious-anaemia-society....

    or at least take a look around the website

    pernicious-anaemia-society....

    Although many of us struggle with GPs there are some good doctors out there - sounds like the one you spoke to on Tuesday was more on the ball.

    PA is the most common cause of B12 deficiency but there are others. The symptoms of PA are the symptoms of the B12 deficiency that it causes. It is a vitamin that is used for a lot of processes in the body so symptoms are very varied.

  • Hi Panpal. So sorry that you're having such a rough time...and thank goodness the second GP recognised that your B12 deficency should be treated 😀.

    It sounds as if you have neurological symptoms and if you do, you will need more frequent B12 injections - called the neurological regime - but not many GPs know about this. In this regime of treatment you have six loading doses on alternate days and then continue with every other day injections until your symptoms stop improving (called no further improvement in the guidelines (this can take many months for some people).

    Also wondering if your GP checked your folate levels? B12 and folate work together so if you're deficienct or low in folate, the body cannot utilise vitamin B12 properly. So...good idea to ask your GP to check if not already tested.

    I'm going to post you some links below which contain information about B12 deficiency and its treatment - and also some 'myth busting' information that may help you in the future (some GP's how odd notions about B12 deficency so knowing some basic information often helps you to help your GP to help you - if you see what I mean 😀).

    Don't be daunted by what looks like a lot of information. Most of the links are to one page documents and the longer one (the BSH guidelines) contains summary sections if you don't feel like wading through it all - though it is very good. I've annotate the links to make it easier to spot what might be relevant to,you at any particular time - just print and read at your leisure.

    B12 deficency can be quite complex so you're likely to have lots of questions in the future. Just pop up a post anytime you need any help and support - we have lots of lovely knowledgable members who can pop along to offer support and help.

    Really hope you begin to feel better soon.

    Taker care 👍 X

    And here's 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 Society Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

    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)

    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 and Intrinsic Factor)

    gov.uk/drug-safety-update/n... (B12 & Nitrous Oxide Contraindicated)

    👍

  • I am slowly reading up and downloading info. Unfortunately I have using small samsung pocket phone.

    Good to know about folate especially as I am due 3rd injection tomorrow. Hopefuly I can also get more details then too.

    Thanks!!!!

  • Good luck. Enjoy the reading 😉🙃

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