Really elevated b12 bloods with 2 years of being very sick, anyone?

[ctilly]

Hi I’ve been very sick for 2.5 years now and have been diagnosed with many comorbidities that accompany hyper mobile elhers danlos syndrome, ie chronic fatigue , pots, rib pain, hip, back chest pain etc. tachycardia, A fib etc

my b12 bloods are coming back very elevated at 3,475 with no supplements taken for over one year! They were 2,400 four months ago and are climbing. Liver enzymes up also! Anyone else have this experience , research showing me 3 options for high b1: which is apparently rare

1. Supplementation ,

2.Liver of kidney disease or

3 blood cancer

Anyone have experience with very high b12 without taking supplementation and what was your final diagnosis ?

Thanks

[fbirder]

You really need to be asking this question of your doctor. None of use here are qualified to answer, nor do we know your full history.

But I would be on the phone to my doctor this morning.

[ctilly in reply to fbirder]

I have been to my dr and I’ve got a referral to a haematologist but was just asking if anyone’s experience with high b12 in the interim

[fbirder in reply to ctilly]

So the doctor has ruled out options 2 and 3. Because, if they haven't I wouldn't want to be waiting weeks/months to see a heamatologist.

[ctilly in reply to fbirder]

No he’s done neither as further investigation is needed by a specialist. I’m wondering if anyone here has had experience with elevated b12 and there was a less dramatic reason for it!!

[Foggyme Administrator in reply to ctilly]

Ctilly...I'm a bit confused as to why your GP has referred you to a haematologist. A haematologist is unlikely to be interested in high B12 levels and would likely refer you back to your GP for further investigation and referral elsewhere.

Has your GP investigated your raised liver enzymes? Liver problems can cause the liver to 'dump' B12 into the blood stream - hence liver problems may the the root cause of your high B12? It’s usual to refer those with abnormal liver function blood tests to a hepatologist for further investigation.

Also - Ehlers Danlos is an condition related to connective disease - and some with this can go on to develop other autoimmune rheumatic diseases - has your GP or better, your rheumatologist checked for underlying autoimmune conditions - some of which can affect the kidneys - which again can cause raised vitamin B12 levels?

ncbi.nlm.nih.gov/pmc/articl...

Might be a good idea to discuss this further with your GP, raising the above points? Or your rheumatologist...if you have one? If not, a good starting place would be for your GP to run an autoimmune panel and then refer to rheumatology. Also worth noting that autoimmune conditions can be present without a positive ANA test (what GP's usually look for). And as you already have a connective tissue disease, referring for further investigations for other potential rheumatic disease would be a wide course of action. Especially as it sounds as if you’ve been ill for some time?

It's also worth noting that some people have a raised B12 for no apparent reason. But...yours is very high (and rising, so together with the abnormal liver function bloods and your medical history...and how ill you feel...certainly should be investigated.

Sorry you feel so ill and appear to have been left like this for several years. Hope you get some action and some answers soon. Let us know how you get on.

👍

P.s also worth noting that rheumatic autoimmune conditions can also affect the liver. Though of course not suggesting you have one - just that it would be wise to rule it out 😉x

[ctilly in reply to Foggyme]

Thank you for you’d reply. Will mention it to my GP and Rhumatologist . The liver was the next investigation, I have a Rhumatologist who has ruled out AS and said hEDS instead as being the root of all the syndromes I’ve been diagnosed with the past 2.5 years but the high b12 is a new investigation prompting more specialists to now have to get involved as any of my already diagnosed conditions shouldn’t be causing it to be so elevated.

[Foggyme Administrator in reply to ctilly]

Good that everything is being investigated ctilly. Saying this with the best of intentions but hope that your rheumatologist has looked further than Ankylosing Spondylitis as a cause of your symptoms....and raised serum B12 levels. Saying this because many don't and not all rheumatologist understand (or test for) some of the more complex autoimmune conditions (even though some of them are actually quite common). It’s also the case that new rheumatic / autoimmune conditions can creep in after initial diagnosis of an original condition (this happens quite often). So...not impossible to have another as yet undiagnosed rheumatic condition (some of which can cause high B12 levels), so hoping your rheumatologist is on the ball and has investigated. (I know from experience that some rheumatologist are better than others - hope that you have the former.)

These things can be extremely complex and it can take a significant amount of time to find answers so sincerely hope that you find some solutions soon.

Best of luck.