Pernicious Anaemia Society
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B12 Treatment

Just to add more confusion i have contacted a Consultant Neurologist Professor who explained does not follow guidelines i'm sure that means only treating the symptoms for B12 . Also explains, If you get a year of B12 injections monthly, you have probably had enough B12 for the rest of your life.

You saturate with B12, with several injections over a few weeks, and then less frequent injections indefinitely. Each doctor has their own way of doing it.

Also guidelines are really for doctors not for patients. Discuss it with your doctor, and if you are not satisfied with the way he is treating you, find somebody else. He explains my B12 levels have always been within the normal range from the figures i provided

ie 155ng/L 145ng/L ? (Range 130-800)

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Thanks for sharing that.

My experience is that some neurologists, haematologists, rheumatologists and other consultants do not always fully understand the problems of b12 deficiency.

I would suggest to people who suspect they are b12 deficient that they read lots of b12 info before any appts so they are well informed just in case the person they are seeing isn't.

" If you get a year of B12 injections monthly, you have probably had enough B12 for the rest of your life"

I would be concerned if this was said to a PA patient and anyone else who has an absorption problem with B12 . In PA treatment should be for life.

"Also guidelines are really for doctors not for patients"

Guidelines are normally written for doctors not patients but I think that guidelines are for both. I would be in a terrible mess if I didn't know what the UK b12 guidelines were as I would be unable to counter the misunderstandings some medics have.

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Thanks sleepybunny

very interesting read thanks for your input.

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I would say that 145-155 serum results are LOW! Also I know that I don't retain the the injected 12 in my liver for long ,if at all , or I wouldn't need so many injections. I think that is a crazy statement of the neurologist to say that a years supply of B12 will last a life time.. Yes I suppose it's true if you have a short life which you will have if you are constantly short of B12 or run out completely. It shows complete ignorance of the problems with PA .

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thanks wedgewood for your kind reply it does say on my B12 result Just in normal !

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When I was 150, and had no end of symptoms, including terrible dizziness and numb feet , it was declared normal . I then went to a private GP who tested me for IF antibodies -positive - I had PA !

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I'm with Wedgwood on this one, if the test of b12 serum has an upper limit rage of 800 why are PA suspected patients and those on treatment never any what're near the number. Every post I read people are mainly less than 300. Also the loading dose can and should be repeated if levels are low I haven't read any one saying they get a Reload?

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This is very worrying.......

"If you get a year of B12 injections monthly, you have probably had enough B12 for the rest of your life."

Can someone please work out how long i am going to have to live to use up my B12 having had over six hundred 1000mcg shots of cyanocobalamin in nearly 45 years before that "Consultant Neurologist Professor" would allow me to have another injection. :)

I "lived" for thirteen years between gastric surgery for the removal of two thirds of my stomach in 1959 before I was finally diagnosed with P.A. in 1972. I would love to know what my serum B12 level was by that time but I suggest it was probably near zero although I guess a "failed" Schilling Test four years earlier might have "boosted" it a bit.

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There you go Clive, its the b12 keeping you alive!

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I did wonder Lisahelen seeing as my doctor told me I would be dead within 3 years if I didn't have the injections - so I reckon they must be working :)

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Hi Clive alive ....May you enjoy many more

years too .

Good health

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Well, the consultant was someone who really doesn't understand how the body stores B12 - if he did he would be aware that B12 is stored in the liver and released for reabsorption into the ileum so if you have an absorption problem most of it is going to leak away - if you have no reabsorption all of it would leak away ... and then there is the myth that it is having B12 in your blood that counts.

He may understand nerves but he certainly doesn't understand digestion, blood chemistry and most of the other processes in the human body.

Sort of starting to feel that his only real skill is getting on people's nerves because he's certainly got on mine :)

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Thank you everyone for all you kind and generous time in replying which i appreciate .I have an appointment with GP and will ask about getting

the IF test when it will be possible and the right time after the loading doses.

I emailed a Patholgist

He said i should look

for other explainations for my symptoms which dont

suggest B12 and he saw my B12 result 145ng/L

He said more of numbness and weakness

reflected in abnormal gait(which i dont have gait problem) and went on to say --

slowing

in mentation.

Asking another question

Can a mother pass on PA

to Dr of Pediatrics who answered my question explained it unlikely PA

will be passed on from one parent to sibling but most likely aquired by an Auto ammune disease

like some forms of arthritis which cannot be inherited .The rare forms

that are genetic

inherited as autosamol recessive meaning both parents have to pass on the gene forit to be active in the offspring.

Good Luck and Good Health to everyone

and thanks very knowledgable forum members too

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Hi Gambit62 thanks for

all the details and the interesting facts too.

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ie 155ng/L 145ng/L ? (Range 130-800)

The "BCSH Cobalamin and Folate guidelines" refer to treating people under 200ng. 130- 800 is a local reference range, not a national one. In the UK, it seems to me that reference ranges for B12 are set really low.

I believe in Japan that if your levels fall below 500, you get treatment. Just think of all the money the NHS could save on treating people with chronic illness/symptoms due to B12 deficiency if they standardised the reference range for B12 across the UK and set a lower limit of 500ng.

Below is a blog post commenting on ref ranges for B12

b12deficiency.info/blog/201...

In my view local b12 deficiency guidelines can be a pain when doctors stick to them without having read the national guidelines. I wonder if the medics you have been in contact with have actually read the BCSH cobalamin and Folate Guidelines?

"Asking another question Can a mother pass on PA"

Perhaps the paediatrician should read this article....

pernicious-anaemia-society....

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Hi sleepybunny

thanks for all the good info

and the helpful links provided.

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