Elevated B12 but no evident reason - Pernicious Anaemi...

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Elevated B12 but no evident reason

andreitom profile image
20 Replies

Hi. I am 27, male. In January this year I visited the neurologist for headaches (eventually turned out it was neck muscle tension and they disappeared) and I was requested to do (among others) a B12 blood test, which read 1040. The doctor wasn't concerned so I forgot about it. In June I repeated it and it was 1200. Then two weeks later I repeated it again and it was 1100. I started to read more about this and the possible causes, which were very serious and I had a lot of tests (liver, kidney, blood, hepatitis and even MRI of chest, abdomen, pelvis and spine) and everything was fine. The only tests I didn't do so far are colonoscopy and endoscopy of the stomach, which I plan to do soon but no symptoms in that department.

The only findings were due to back pain, like a beginning of herniated disc and dehydrated discs in the spine. Also sometimes I have problems with the knee (come & go). Could these be symptoms of rheumatoid arthritis (and I read that RA can cause elevated B12).

What is your opinion on this? Anyone faced with this?

Thanks!

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andreitom
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20 Replies
EllieMayNot profile image
EllieMayNot

Hello. Are you taking any supplemental B12 (multivitamin or other source)? If so, this could be causing the elevated readings and may not be a cause for concern.

andreitom profile image
andreitom in reply to EllieMayNot

No, nothing.

fbirder profile image
fbirder

You've been checked for the serious possible causes. Thankfully they found nothing.

Just like some people naturally have a low serum B12, but absolutely no symptoms of a deficiency, some people will have naturally high levels.

andreitom profile image
andreitom in reply to fbirder

Also, I did a holotranscobalamin test with could not define exactly the value (due to some unknown reason) but returned with a value >150.

fbirder profile image
fbirder in reply to andreitom

That means your result was above the limit that they can accurately measure.

Nackapan profile image
Nackapan

I thought RA elevated your inflammatory markers in your blood. Not heard of elevated b12. Your results are probably all the same due to lab differences.

Have you considered doing an active b12 test?

Have you checked your food for obvious b12 . So many foods are fortified. Keep going with the investigations

andreitom profile image
andreitom in reply to Nackapan

Active b12 could not be determined due to some reason but it was declared >150.

Nackapan profile image
Nackapan in reply to andreitom

Oh okay

Nackapan profile image
Nackapan in reply to andreitom

I really hope you get some answers . Keep going. It can take too long sometimes as the specialists di not talk with each other ton get the jigsaw done. I've seen too many people decline in health before the right 'label' found to get correct treatment and understanding. TC

andreitom profile image
andreitom in reply to Nackapan

True but at the same time, when you don't find anything (I still have to go for GI tract investigations) you have to give up at some point, since I don't know if this started this year, 5 years ago or was at this level the entire life :)

Nackapan profile image
Nackapan in reply to andreitom

Yes. Just do what you feel necessary for your symptoms and general well being.

Gambit62 profile image
Gambit62Administrator

would be interested to know about link between RA and high B12 as I can't think of any way the two should be related in that way unless it was because patients with RA also had PA (both autoimmune) so had been treated with B12 injections.

andreitom profile image
andreitom in reply to Gambit62

Not sure why but I read in multiple medical articles that. Here is a reference (you can also find others that are more extensive): ncbi.nlm.nih.gov/pubmed/694928

Gambit62 profile image
Gambit62Administrator in reply to andreitom

Thanks - that was really interesting - it looks like the link to high B12 may be related to the effect of progression in RA on the liver, or the effect of drugs used to treat RA, which can cause damage to the liver which can result in 'B12 dumping', elevated B12 levels and functional B12 deficiency. However, what you are saying isn't consistent with this in as much as your liver function appears to be okay. Liver damage is also associated with the more advanced stages of RA so it really doesn't sound consistent with what you are describing.

I'm not a medical professional.

It may be that posting your query on a forum specifically related to RA might get you some answers.

Are you suffering from stress? I’m not suggesting that’s the cause of your high B12 but it could be the cause of some of your back issues?

andreitom profile image
andreitom in reply to

It could be but I'm in control of that. Also a change of the job which led me to another office and a different desk which I was not used to and my left shoulder was always tensed due to the different setting. I don't have headaches due to muscle tension anymore.

Look up SIIRPA. You might find that interesting. I know I did as like you I still had the symptoms but no test found anything. Good luck.

andreitom profile image
andreitom in reply to

Can't find anything. What does it stand for?

Www.sirpa.org. Georgie Oldfield is excellent

Lateralg profile image
Lateralg

I'm an 84-year-old man with autoimmune hepatitis.

My last D12 readings: Two occurred before my AIH was diagnosed, and I had no symptoms other than fatigue.

>1500, >2000, >2000. My doctors show no sign of concern. This makes me uncomfortable. It seems that at some level (20,000, 2,000,000 ... ) there would be a problem, yet if I'm actually at 20,000, my doctors & I don't know about it.

I'm looking for advice.

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