High b12 & elevated liver enzymes

[Irismay]

Hi everyone - just had blood test results which show 1600 b12 levels & elevated liver enzymes. Can anyone tell me what the cause may be? My GP stopped b12 injections October 2017 as levels were >2000. I had been having b12 injections for approx 4 years but was never told why or investigated. Following latest blood test results my gp said definitely no more b12 shots & wants to do liver scan. Does this mean my liver isn't processing b12 properly? Should I be worried? Thank you so much xx.

[fbirder]

Impossible to say. You really need to wait for the doctor's diagnosis.

[Irismay in reply to fbirder]

Thank you - I guess it's the waiting game again. My GP did say she wd put me on 2 week track for the scan which is making me nervous.

[Gambit62 Administrator]

If you have been put on injections that would suggest that your levels were low in the past due to an absorption problem in which case general protocols in the UK are that a) repeated testing of B12 levels isn't necessary (and shouldn't be used as the basis for deciding when treatment is due) b) injections are for life.

Liver problems can cause B12 dumping which raises serum B12 in people who are not supplementing or having B12 injections.

If someone has a B12 absorption problem then liver stores are unlikely to be relevant as the mechanism for getting the stores into your blood depends on the same mechanism that you use to extract B12 from your food.

It is good that your GP is investigating the liver enzymes but I suspect it is unlikely that your raised serum B12 levels are related to a liver problem - and more to do with the fact that you have had B12 injections in the past.

Although on average B12 levels would deplete in a few months some people respond to high serum B12 levels in a way that can make this process much slower and the fact that your levels are still as high as they are over a year after supplementation suggests that you may fall into this category. You may also be highly symptomatic of B12 deficiency due to a functional deficiency.

If you are struggling because the injections have been withdrawn then it may be worth speaking to the PAS directly about getting them reinstated (though you may also need to join).

pernicious-anaemia-society....

pernicious-anaemia-society....

None of this detracts from the need to investigate why your liver enzymes are high. I hope that the investigation happens quickly and your GP can get to the bottom of and resolve the problems quickly.

[Irismay in reply to Gambit62]

Thank you so much for yet another extremely helpful reply. I certainly intend to join PAS as I feel I may need their help with this, but i would very much like to show my GP what you have written to me first (if this is allowed- do I need your permission?). She definitely isn't open to being questioned about it but you have given such a great answer & given me some hope. I very much appreciate it - thank you 😇.

[Gambit62 Administrator in reply to Irismay]

would suggest that we try and quote some actually studies/articles with references that relate to the processes that I am talking about, ie the scientific evidence that shows its genuine, I'm not sure that I have articles bookmarked for everything but the following may be useful.

academic.oup.com/qjmed/arti...

about causes of raised serum B12

gut.bmj.com/content/gutjnl/...

Last couple of paragraphs under the discussion of Transcobalamin !! on the third page - talking about the intricacies of interpreting high serum B12 levels in relation to liver function etc.

bloodjournal.org/content/bl...

more generally on treating B12

Also the BCSH guidelines on treatment and diagnosis of cobalamin and folate disorders- GP should be able to access these through the BNF

onlinelibrary.wiley.com/doi...

There is an addendum to this - recent change to say 2-3 months for maintenance doses where no neurological involvement.

Your GP may also find the sub-section of the PAS website particularly aimed at helping medical practioners improve the diagnosis and treatment of PA (and B12 absorption problems)

pernicious-anaemia-society....

[Irismay in reply to Gambit62]

I am very impressed with your knowledge & how you have all the info at your fingertips! It does worry me that my gp wont even glance at any evidence I may produce- I can see her rolling her eyes now! She tried to throw sertraline & counselling at me when I tried to explain my symptoms. I even said can i try restarting the b12 injections as I'm convinced the majority of my symptoms will improve. To no avail - definitely not going to have any injections! So far I have had 2 gastroscopies (normal) & I am due to have a colonography (nice). I think if they had reinstated the b12 injections when I asked months ago I could have avoided all of these horrid tests & saved the nhs a fortune! I guess theyre just being cautious & i should be grateful but its frustrating that they dont listen either - I know my own body. I have to wait until the end of February before i see my gp again when i will hopefully have had the liver scan & I have thought of the best way to present my case with your evidence. I am forever grateful.

[Gambit62 Administrator in reply to Irismay]

It may be more productive to put things in writing before the meeting and probably copy to the practice manager. Main thing to do is to request that you are treated in accordance with current guidelines which would mean reinstatement of your B12 shots as these should be for life.

Would also suggest discussing things with PAS (having joined) as they may be able to help you more precisely with what to say.

[Irismay in reply to Gambit62]

I will indeed do as you say. I will also join PAS. Thank you, I am so grateful xx

[lynnwin]

Hi irismay.. my b12 has been at 2000 since 2015 that’s when my injections were stopped and still high .. how are you now have you had any answers ? Lynn xxx

[Irismay in reply to lynnwin]

Hi Lynn - I have an appointment with GP on Friday who said she was going to get some advice from a heamatologist & that was about 6 weeks ago. Hopefully I will get some more info but I don't hold out much hope as the gp doesn't seem bothered & seems keen to dish out antidepressants (obviously thinks I'm a hypochondriac) . I will let you know what happens as soon as I can. Thanks so much for asking - i hope i can get some useful advice for you. Xxx

[Jesslynn87 in reply to Irismay]

My dr also pushes meds and thinks I am a hypochondriac

[Irismay in reply to lynnwin]

Hi - I have an update from my GP appt re high b12. As all my blood tests came back within range- apart from high b12 - my gp asked heamatologist for advice. He basically said as my bloods were normal it probably wasn't cause for concern but said he would ask a consultant Chemical Pathologist for his advice. He has recommended I have another blood test to rule out something called macro b12 which I understand has some thing to do with the way the body processes b12 & clears it through the renal system. Apparently this is very rare so I have my doubts about that diagnosis but at least they're trying! I would recommend you have a full blood count if you haven't already & definitely make sure your gp follows up your very high b12 level. Xx

[Jesslynn87 in reply to Irismay]

Did you ever figure out the issue?

My b12 is high and my ALT is elevated slightly.

[Irismay]

Hi

I havent really got any further other than having b12 injections reinstated due to deficiency symptoms. Interestingly though I have been very unwell over past 6 weeks with stomach problems, excess gas, vomiting, diarrhoea & constipation, massive weight loss. My gp has referred to urgent gastro this month & I have a ct scan in a couple of days time. I feel like I have been punched in the upper abdomen & acid running through my intestines. My kidney function is low too apparently.

Whether something has been brewing as the cause of my high b12 I have yet to find out. I cant help wondering if it was a good idea to have reinstated the b12 as I have never felt so Ill or whether it's just a coincidence. I keep reading conflicting info on b12 I'm sick of trying to analyse & trying to make an informed decision. Its such a complicated issue.

Sorry I cant be any further help at the moment but I hope you get your health sorted.

Regards

[Ctadds1]

How are you? Did you get any answers from your doctors ?

[Irismay in reply to Ctadds1]

Hi Ctadds1

Thanks so much for your message . A year ago I had an endoscopy & colonoscopy as I was feeling very unwell. Turns out I had gastritis, diverticulitis & an abnormally long colon! Also slow transit through the gut.

Ive been very careful since in what I eat & how much I eat (little & often) & it works quite well. I'm still on 3 monthly b12 & now take each day as it comes.

Thanks for asking & I hope you are well.

[4Light_ in reply to Irismay]

It sounds as if you found some explanations. Thought I’d share, I have an elevated b12 level and high ALP levels, but I also have two copies of the MTHFR mutation which impacts my body’s/cells ability to process b12 that has not been mythelated. I have to take a pre-mythelated B12. I’ve been doing a ton of research and decided to see a Functional /Integrative Medical Practioner who knows more about MTHFR as I have two copies and that puts me at risk for many health issues. DNA testing helps. With this knowledge, I’ve been working to change the trajectory of my health.

[Irismay]

That is very interesting- thank you for sharing your story so far. Can I ask how you found out about the MTHFR test? Did your gp recommend you have it as your ALP levels were high or did you have it done privately? I wish you luck on your journey.