Pernicious Anaemia Society
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High Vit b12 levels - help!


I will try not to ramble!

A brief history:



Interstitial Cystitis

Peri-anal abscesses x3 (with blood poisoning)

Glandular Fever (2010)

Hypermobility syndrome

extreme fatigue

Vit D deficiency - levels now "normal" but I have been refused a maintenance dose(!)

I have most of the symptoms:

extreme fatigue, poor concentration, confusion, clumsiness, lack of coordination, brittle nails, mood swings, dizziness, bumping into things (covered in bruises!), irritability, panic attacks in public, anxiety, sensitivity to noise and light, diarhea and constipation, sleep disturbance, hair loss, ulcers, bleeding gums, blurred vision and both my sister and mother have been diagnosed with Vit b12 deficiency.

I have a level of over 900 on my most recent test and have shown my GP all the info from this site to support being given the therapeutic dose based on my symptoms. My mother has spoken to Mr Chandry's staff and they have said I should be starting treatment as soon as possible. Long story short, my GP practice has refused to treat me with the injections stating "it is extremely dangerous to treat me and should not be done under any circumstances". My actual GP has read the information and has forwarded a summary of my condition to the local haemotologist to see if they will back her in administering the dose, but this could take a while for a response.

I have had the usual "diagnosis" of CFS, ME and Fibromyalgia, but I am now faced with a fight to get the treatment I desperately need to function. I am currently studying for my post grad finals and am due to start training as a lawyer in Sept but if this continues, this will not be possible and my life will be taken away from me.

Please can anyone let me know any opinions and suggestions on how to proceed.


Sam :)

7 Replies

Perhaps your best bet is to contact PAS by phone and speak to the nurse. They may be able to help you see an other Dr that will treat you, infusions are a way forward for some, Marre.


My mum phoned on my behalf about a week ago and the gent on the line said I was to start treatment right away. However, he said if I signed up to be a member I could get further assistance, such as recommendations for other doctors or maybe a written letter to my GP to support her. My GP wants to give the infusions to me, but the practice partners have refused point blank. She's gone a little against protocol referring my case to the hospital.

Is the extra advice/support via the helpline or is it located elsewhere? Sorry if I am mistaken.

Many thanks for your support - it's reassuring to know I am not alone - but I wish none of us were in this position. It's taken my Mum over 10 years to be diagnosed correctly....and even my sister when diagnosed with Chrons - we had to fight tooth and nail to get her the treatment.

Thanks x


Hi Biggles,

Best bet it to ring Head office: 01656 769 717, in the morning and ask, the person who answers will know how you can get into contact with the right GP to help you.

I'm not sure what policies PAS has for giving you extra advice/support, I give mine free of any conditions, and thought PAS does the same..

I know what you mean, no one should have to fight to just be well, it is all very sad!

Kind regards,



Not sure what the justification is for saying that treating you would be dangerous - B12 isn't a vitamin you can overdose on (some people have allergic reactions but that is different). Hydroxocobalamin - the form generally used in the UK is used at very high dosages - which would put whole serum well above the level you have - to treat cyanide poisoning.

Sorry you are having such problems - can empathise.

Lots of people try other ways of supplementing - I use a nasal spray which seems to work for me - in fact I think it is probably more effective for me than the injections. It's quite expensive - spray costs about £22 and using it 3x2squirts a day (recommends 1 or 2 squirts but for me that took the edge of the brain fog but was only when I started on the 3x2 that I noticed a real difference very quickly - matter of a week ... and other people have noticed the difference so not just me.


Just found this on the CDC (US Centre for Disease Control) web site

Be aware, however, that patients who have a vitamin B12 deficiency with associated megaloblastic anemia might experience hypokalemia and fluid overload early in treatment due to increased erythropoiesis, cellular uptake of potassium, and increased blood volume.

Relevant page

I don't have megoblastic anaemia so not at risk myself but probably worth bearing in mind.


Hi Gambit62.

Where do you buy the spray from.

Thanks .

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