Taken off injections and feel awful - Pernicious Anaemi...

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Taken off injections and feel awful

6 years ago•3 Replies

I have had B12 injections every 8 weeks for years. I had a health scare recently and had a lot of blood tests done. My b12 levels were over 2000 so my doctor has taken me off the injections. However I feel like I have taken a step backwards to the way I used to feel before I got them. So very tired, lethargic, weepy, depressed, withdrawn, clumsy, shaky hands, headaches. My doctor says she wont give me the injections despite my symptoms and I don't know what to do next.

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Meigleminx

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Gambit62Administrator6 years ago

Meigleminx the following is based on the assumption that you are in the UK. Protocols vary from country to country so a different country would result in different advice

- your doctor is being irresponsible and not treating you in accordance with current guidelines. Unfortunately you are not alone in this.

Current guidelines are that treatment is for life and should not be based on serum B12 results. Your GP can access the BCSH guidelines on diagnosis and treatment of cobalamin and B12 deficiencies through the BNF if he wants to double check this. They can also be accessed here

onlinelibrary.wiley.com/doi...

Serum B12 is a measure of the amount of B12 in your blood. It does not tell you whether that B12 is getting into your cells and being used in your cells. There are a couple of tests that can help to clarify if there is a problem with your cells not having enough B12 - MMA and homocysteine - both will be high - but they can also be raised by other things so they are tests that need to be done in a context that rules these out.

The fact that you have had injections means that serum B12 is no longer a useful test unless the results come back low. Injections raise serum B12 levels well off measurable scales and in a significant number of people this kicks off a reaction that keeps it trapped in your blood leaving your cells - which need B12 - starved of B12 unless your serum B12 levels are high enough to ensure that enough gets through. The result is that many people need extremely elevated B12 levels - often off the top of the measurable scale - to function (myself included).

If you aren't a member of the PAS you may find it useful to join and contact them for support.

pernicious-anaemia-society....

However, the first step is to right to your GP pointing out that they are not treating you in accordance with current best practice and guidance and to request that they reinstate your injections to comply with current best practice and guidance.

Polaris6 years ago

This seems to be such a common misconception by clinicians! The latest BMJ research document summary below demonstrates the uselessness of testing after treatment as do other guidelines so, hopefully GP will probably be able to access and read the full document (behind a paywall). At the bottom of page 4 ' under, 'How is Response to treatment assessed'), it outlines that, 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 Dutch link re. Misconceptions about B12" - No. 5 refers to this too:

stichtingb12tekort.nl/weten...

Another helpful link with information and ideas for writing to your GP:

b12deficiency.info/what-to-...

Good luck MEigleminx