Hospitalfinance

[Hospitalfinance]

This is the first time I have written to Pas. I am an avid reader for several years now . My husband 70 years has been self injecting for many years ( doctor is aware ) He had the loading on the NHS . After that he tested within range . However all his symptoms returned , hence the SI every two weeks . He had his spline removed 40 years ago ( following accident ) . Recently he had blood tests and his B12 read 2000. He cut the Si down to weekly but found his symptoms returned . Can the high reading be dangerous ? Or is he not absorbing the B12 properly . This forum has been a great help to us over the years . We have read Martyn Hoopers books and given copies to many of our friends . Keep up the good work .

[Foggyme Administrator]

Hi Hospitalfinance . A serum B12 blood test of 2000 following B12 injections is nothing to worry about (mine is always over 2000 and we have seen them here as high as 5999 - as far as the scale was able to measure).

Serum B12 levels are always high following injections, because lots has been injected. It's always high following an injection, and gradually falls until the next injections is given, when it inevitable shoots up again.

For this reason, normal reference range serum B12 levels no longer apply once injections have commenced. Unfortunately, some GP's see this as a reason to cut down (or even stop) B12 injections. This is wrong.

The right frequency of injections is the frequency that is required to get and keep you well...and this is different for every individual. If symptoms return prior to the next injection, this is a sure sign that more frequent injections are required.

B12 is non-toxic and water soluable and has been proven safe even at extremely high doses (10mg doses are is IV for carbon monoxide poisoning) and there is no chance of overdosing on it (any excess is simply excreted in the urine).

So...suggest that you husband continues to inject as much B12 as he needs to keep his symptoms from returning. Ideally, injections should take place before symptoms return rather than waiting until he starts to feel ill again.

I'm going to post links to information about serum B12 testing and the safety of vitamin B12 injections. Hopefully this will,put your collective mind's at rest.

Good luck to you both....and lovely to see you posting after all this time. Post again if you need more help or advice. Here come the links:

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)

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[clivealive Forum Support]

Hi Hospitalfinance it may pay for your husband's Folate level to be checked as this and B12 help his iron to make red blood cells.

[Hospitalfinance in reply to clivealive]

Thanks Clive, he is taking folic acid tablets. He has stopped his PPI , and takes gaviscon in tablet form instead . He had a bowel resection 40 years ago following accident , and is on antibiotics for pneumonia for life Should have been given them after his spline was removed. This has caused him a lot of damage . . He takes 1000 mg fish oil daily, his concern is he might have a stroke if his B12 reading is too high. He is very slim and loves to work - has to achieve something everyday . If he had discovered his deficiency after his accident and had B12 injection , he would never have needed to be retired from work . He has a legacy from being B12 deficiency which the GP recogises . However he has to SI which he is happy to do . Thanks to this forum for getting him set up. He loves his gardening , wood turning and voluntary work at our local sports club . All thanks to B12.

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[mrsm49]

I take sublinguals and my b12 is 2000, freaks gps out but not the consultants. They aren't worried but say I'm wasting my money. However when I reduce my dose (5000 daily) my symptoms return. I'm trying a slight reduction of 5000/3000 every other day at mo. I'll see how I feel in few weeks. If symptoms come back I'll just stay on 5000 a day. I also take folic acid

[Hospitalfinance in reply to mrsm49]

Thanks for the information , it makes us feel more confident hearing how other people fare . Will keep reading the forum ,

[pitney]

Hi Hospitalfinance, mine is always around the 2000 my GP says she would like it to be around 1200 but it never is, all best wishes.