diagnosed with pernicious anaemia 12 years ago and have been receiving B12 injections, 3 mthly. Now, new doc says I dont need injection.?

[1943siamese]

Each blood test says levels too high

[artyboots]

Rising levels are a positive, not negative, sign in someone deficient! Your new doc should contact The Pernicious Anaemia Society for urgent education. Following treatment a blood test achieves very little (apart from to confirm levels are going up). Serum levels do not correlate with tissue levels. If you need B12 and it is stopped, or insufficient, you risk severe and permanent injury. There is a wealth of information on the PASoc web site. You could print it out and take it to GP as first step? Good luck.

[1943siamese in reply to artyboots]

Is it possible I was misdiagnosed in the first place?

[Rosiered in reply to artyboots]

I totally agree. My GP told me that blood tests cant show levels accurately because they are changing all the time. Also a test just after injection will show a high level before it starts to be used up. I was told that I would be on injections permanently and that to come off would result in my symptoms to get worse until I would die.

[B12Turbo]

Hi 1943 Siamese

Artyboots is quite right and the advice is good. If the 1943 refers to your age and you are therefore 70 like me, then the other aspect is that things in this game don't get better as you age, sorry but quite the reverse is true.So get yourself the info printed out and then approach your G.P. very diplomatically of course, but be firm and if that don't work, ask him to refer you to a consultant and if he refuses, then take it up with your local Health Board. If you would like to see for yourself exactly what Artyboots means by "Severe and permenant damage, come back to me and I will send you a link to a video.

Good luck, but as our American friends would say " You've gora be prepared to kick ass" politely of course.

[pugsly]

hi just done what you are recomending, to my husbands Dr as he has dementa so i look out for him and now feel as i;m in the wrong for dareing to go againts his findings

[Hidden in reply to pugsly]

Pugsly next time your doc makes you feel like you're in the wrong (you're not), point him to the work of Prof. David Smith. He presented at the PAS conference, "B12 as a Key Player in Preventing Brain Atrophy that leads to Alzheimer's Disease":

youtube.com/watch?v=n7aMPF5...(Not working as expected?)

(His presentation starts 4 mins into the video)

You can find more of his research on pubmed:

ncbi.nlm.nih.gov/pubmed/236...

"Our results show that B-vitamin supplementation can slow the atrophy of specific brain regions that are a key component of the AD process and that are associated with cognitive decline. Further B-vitamin supplementation trials focusing on elderly subjets with high homocysteine levels are warranted to see if progression to dementia can be prevented."

ncbi.nlm.nih.gov/pubmed/187...

"Elevated blood concentrations of total homocysteine and low-normal concentrations of B vitamins (folate, vitamin B12, and vitamin B6) are candidate risk factors for both Alzheimer's disease and vascular dementia."

ncbi.nlm.nih.gov/pubmed/982...

"Low blood levels of folate and vitamin B12, and elevated tHcy levels were associated with AD. The stability of tHcy levels over time and lack of relationship with duration of symptoms argue against these findings being a consequence of disease and warrant further studies to assess the clinical relevance of these associations for AD."

[Hidden]

My advice? Get a new doctor. PA is for life and if he doesn't know that then you need to get away, fast. Lots of good info here:

b12deficiency.info

[stillwaiting]

Ok so I know nothing - I am really new here but please please be careful. I am in the midst of tests but........ 12 years ago I had 2 B12 jabs and was then told I didn't need any more. I am not a doctor and so I did as I was told - I knew no better. I have had tons of neuro probs since. This year I was diagnosed with Hughes Syndrome and my consultant wanted a referral to St Thomas' - I await many of the blood test results but they did phone and say I am B12 deficient. I feel that much of my neuro stuff is down to the B12 issue and who knows if they will be reversible after all this time.

I don't want to upset you but I just wish I'd kept up with the jabs.

Lynn.x.