Recent bloodwork...very high B12 levels....should I be concerned?

[ljmulledy]

I have PA...just had my B12 levels taken and they are >2000 pg/ml

Any concerns?? The best i've felt in a long time....motivated, inspired, energetic, hopeful, etc....

[clivealive Forum Support]

Hi ljmulledy an extract from a Dutch website should put your mind at rest but as a not medically qualified person it would be interesting for me to know what injection regime you are on,

"Treatment with high dose vitamin B12 been shown to be safe for more than 50 years

Out of fear of overdosing vitamin B12, treatment is often reduced to below the frequency that is needed by the patient, or, even worse, treatment is stopped completely.

As a result, symptoms can reoccur again and again and even become irreversible.

It is very clear this fear of overdosing is based on a misunderstanding. For over 60 years high dose vitamin B12 treatment has been used without any signs of the danger of an overdose.

The Dutch National Health Counsel and the Regional Disciplinary Medical Board of Eindhoven have stated clearly that vitamin B12 is non-toxic.

Clinical research and the treatment for cyanide poisoning have shown that even extremely high doses of vitamin B12 and the serum values that go with it are harmless.

A decennia long history of safe treatment

"

The article goes on and on and on...

"Conclusion

A vitamin B12 deficiency can cause many different symptoms, among which are serious neurological problems. The treatment with high dose B12 injections is not only completely safe but fortunately also very effective. With the right treatment patients can recover completely. Starting straight away with treatment is essential, as is the continuing treatment in order to give the body enough B12 to fully recover. Therefore it is essential that patients are no longer exposed to the real danger of irreversible symptoms because of the imaginary fear of overdosing.

References

1. Voedingsnormen: vitamine B6, foliumzuur en vitamine B12. (Nutritional standards: vitamin B6, folic acid, vitamin B12) Gezondheidsraad.Publicatienr. 2003/04, Gezondheidsraad, (Dutch National Health Counsel) Den Haag 2003:130-31"

I hope you continue to feel "motivated, inspired, energetic, hopeful, etc...."

[Hidden]

Not sure if you need to be worried about high B12 levels. Would your GP not advised. But, brilliant you are feeling so energetic. Motivated, positive, brain fog less. Should this be what you would like to feel at all times? Worth thinking about?

[wayneland123]

I usually have B12 >2000 (standard range 200 - 910) and elevated MMA in the 0.9-1.1 range (standard range <=0.29) although a couple of times the MMA has been almost normal. The elevated MMA is supposedly a better indicator of B12 deficiency than serum B12 levels. My doctor can't figure out what is going on. The literature says liver or kidney disease can be the culprit, but my liver and kidney functions have been normal. The literature also says a solid neoplasm may also cause this, but so far there is no evidence of that. A bone marrow biopsy was basically normal with mild macrocytic normochromic anemia consistent with anemia of chronic disease (i.e. they have no other explanation) and blasts were normal as were iron stores. I also have a nonspecific autoimmune condition with IgM >150 but no specific reason for that was found.

My recommendation is to ask whether your liver and kidney functions are okay and whether a solid neoplasm might be causing this, although the latter is unlikely.

[Foggyme Administrator in reply to wayneland123]

Hi Wayneland123. Don't have much time but (off for Physio appt.) but...have you heard of functional B12 deficiency?

High B12 level expected if you are supplementing...mine is always over 2000.

Serum B12 level only shows how much B12 is sloshing around in your blood...it does not show what is happening to B12 at the cell level (how much your body is actually able to use).

MMA levels usually return to normal once supplementation is started...the continued high level may mean that you have a problem with the methylation process (the process which enables B12 to be extracted from the cells and utilised by the body).

Just wondering...is the B12 getting rid of all your symptoms?

Very impressed that your doctor knows enough to be investigating, but very few doctors know anything about (or have even heard of) functional B12 deficiency.

Sorry, but no time for more...a search on this site for functional B12 deficiency will bring up lots of results on the subject...

Worth a thought....good luck

[Snookiej]

At the last count my levels were above 1300, yet I still feel tired, lethargic, foggy and on occasions I have a good day!

[ljmulledy in reply to Snookiej]

it's been three years in for me...im finally feeling 'normal'

[fbirder]

I would only be concerned if you aren't taking any supplements.

The last three B12 tests I've had have all been 5999 (the test can't go any higher). I wonder why each doctor I see thinks that it needs to be measured again!

[ljmulledy]

Update. Discussed levels with GP today. He is not concerned with the levels. This past Mid-Juy i saw him and was apathetic, unmotivated, lethargic and told him i felt it was my B12. I began supplementing my weekly shot with sublinguals, methylcobalamin sheet and a b12 drop. Since July my symptonms have resolved. I am optimistic, motivated, enegetic...feel great. He said 'keep doing what you're doing." So all is good. Thanks to everyone here for talibg the time to respond.,

[Paulaw22]

Wish mine were high! I've been having injections and taking sublingual spray for years yet mines just ok! Keep feeling good! The might reduce your frequency given levels, if your having injections but as the other reply says don't let them stop, not yet.

[ljmulledy in reply to Paulaw22]

I self inject weekly

[Paulaw22]

The recommended dose is three monthly but I have mine eight weekly with sublingual everyday. Obviously I don't know what dose you give yourself. We are not allowed to inject ourselves unless you are a trained nurse, not sure why because diabetes are allowed to inject insulin?

It might be an idea to reduce the frequency to once every two weeks? You would still benefit but your levels might not reach such a high level?