B12 level too high: B12 level too high... - Pernicious Anaemi...

Pernicious Anaemia Society

32,319 members23,535 posts

B12 level too high

yachtlady profile image
13 Replies

B12 level too high. Anyone else have this problem? What should I do about it?

Written by
yachtlady profile image
yachtlady
To view profiles and participate in discussions please or .
Read more about...
13 Replies
Lulu_65 profile image
Lulu_65

High b12 is only a problem if you haven't been supplementing. My b12 is beyond the highest level that the lab test records but it's not a problem as I know it was extremely low before b12 injections.

Have you been supplementing b12 or not?

Lu

yachtlady profile image
yachtlady in reply to Lulu_65

No, I have never been supplemented. I don't think I have ever had my B12 checked before.

fbirder profile image
fbirder in reply to yachtlady

So what is the level? What units?

High B12 can be innocuous or noucuous.

What sort of diet do you eat?

Gambit62 profile image
Gambit62Administrator

and to add to the questions asked by fbirder - do you have any symptoms?

if having high levels of B12 is a problem for you then the symptoms you have are going to be the same symptoms that are associated with a B12 deficiency - functional B12 deficiency.

You can find a check list of symptoms here

pernicious-anaemia-society....

If you don't have any symptoms then high levels aren't a problem for you.

B12 isn't toxic - one form - hydroxocobalamin - is used to treat cyanide poisoning at doses 5000-10000x those used to treat patients who have problems absorbing B12 and it is considered to be a treatment of preference as it isn't toxic (the main concern is the potential risk of hypertension as it involves injecting a lot of fluid into your blood).

yachtlady profile image
yachtlady in reply to Gambit62

What started me on this search was burning feet, especially at night. There was also a sort of rash, not itching, on my ankles. I had to sleep with a cold pack on my feet. The rash is still there and looks even worse, but the burning has more or less subsided since I am taking Gabapentin capsules, 100mg, three times a day, prescribed by a neurologist. The problem with that is the medicine is causing swelling of the feet and dizziness. The neuro did not seem at all concerned about the level of my B12 but I am. Any ideas?

Gambit62 profile image
Gambit62Administrator in reply to yachtlady

not sure about the rash - doesn't sound like B12 directly - though B12 deficiency does make you more prone to infections. Have you spoken to anyone about the rash? I used to get awful infections on my feet and when I get them these days it does tend to be a burning rather than an itching sensation. Getting rid of the infections was extremely difficult (though I find that daktacort usually does the trick).

Might be worth speaking to a pharmacist about the medication if the neuro isn't prepared to review the gabapentin - sure there must be alternatives that would suit you better.

yachtlady profile image
yachtlady in reply to Gambit62

Thanks for the tip on daktacort. I will find some and try it right away. Both my pp and the neuro have seen the rash but seem to have no clue. They both think I have neuropathy, but I had dopplers done on both legs and my arteries and veins seem to be perfect so no circulation problems there. The rash does not itch but makes my legs look awful and red.

Gambit62 profile image
Gambit62Administrator in reply to yachtlady

please make sure to explain everything to pharmacist amd follow their advice. daktacort contains a cortisone so not recommended for long term use.

yachtlady profile image
yachtlady in reply to Gambit62

Where can I buy Daktacort? I have not found it available online.

Gambit62 profile image
Gambit62Administrator in reply to yachtlady

its available over the counter in pharmacies in the UK - possible it may have other names in other places.

helvella profile image
helvella in reply to Gambit62

Just ask for Hydrocortisone cream.

It appears to be available here:

lloydspharmacy.com/en/dakta...

Shamrock40au profile image
Shamrock40au

I've had very high B12 for at least two & a half years. <1476 pgml That's from the time I was first tested. I have never had B12 injections. I've been to a Haematologist who ran an extensive amount of tests. All have come back negative. I am in good health. This is obviously unusual. I just have to think, if I'd never been tested for B12 I'd never be concerned about it.

Gambit62 profile image
Gambit62Administrator in reply to Shamrock40au

thanks shamrock40au. Certainly true that people vary a lot in how they respond to levels in blood and certainly true that for many - most even - high levels aren't something to worry about. There are a few conditions that can lead to elevated levels in blood that do need treatment (liver and kidney issues mainly) but B12 is only a marker for these problems so good to get them checked out as you did and if they aren't present ...

Not what you're looking for?

You may also like...

Hi Again - b12 and Peripheral Neuropathy (PN) - its wasnt the Alcohol?

Hi again lovely folks, and a big thanks to those "constant" heroes in this forum; who stick around...

Gluten and B12 deficiency

Is there a link between B12 deficiency and gluten sensitivity? My neuropathy has massively improved...

seeing neurologist, advice on b12 injections welcomed…

hi all? have been prescribed with PA. My ferritin levels are normal - 177 Vitamin D- 70....

Has anyone had insomnia from B12 injections?

I have not been able to sleep since my B12 loading injections (EOD for 6 weeks) - has this happened...

Serum ferritin too high?

Can anyone tell me whether 286 is too high for a serum ferritin level? I had an iron infusion a...