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Elevated b12

Lynsuk profile image
23 Replies

Hi, I've recently been told i have 1380 of b12 and to come off my multi vitamins. I'm very paranoid since googling! And wondered your opinions? My dr wrote by my results "as expected" and I've not spoken to this dr since (near impossible!!) So I don't know why she wrote this.

My History: Some hormonal problems so went on cerazette progesterone only pill which played havoc with my hormones so after 2 weeks came off them. I became really anxious after this and get buzzy feet and tingly senstions throughout body. Another dr attributed this to anxiety and gave me beta blockers! I took a high strength multi vit before this (patrick holford) and used spiralina in smoothies. I wonder if this can elevate b12 levels? as well as stress? ( my friend died of ovarian cancer in august this year and mum being tested for Motor neurone)

I'm stressed so bad! so all symptoms aggravated at the moment.

Your help/opinions appreciated

Thanks!

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Lynsuk
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Gambit62 profile image
Gambit62Administrator

Not sure how high strength the high strength is and if it is only B12 - so would need to know that to really respond.

There isn't necessarily a problem with having high B12 levels .., mine are permanently off the top of the scale as I need to supplement a lot to feel okay..

The anxiety could be caused by a B12 deficiency. Some times high levels of B12 in the blood can kick off a reaction that means the B12 doesn't get through to your cells in the form they need which could be a problem.

Most likely cause of the high levels is the supplementation. Under normal circumstances - ie no absorption problems - the body needs very little B12 on a daily basis and excess tends to get stored in the liver.

Worth trying to come off the supplementation.

Lynsuk profile image
Lynsuk in reply toGambit62

It's a multi vitamin with 10mcg that I take twice a day. So 20mcg per day in all. I'd been supplementing as have had fatigue and joint pains in the past as well as a vit d deficiency. I have a lot of symptoms that suggest low b12 including tingling, anxiety etc so when they said it was elevated and to test it again in 3 months...well it didn't help my anxiety! Thanks for replying :)

Gambit62 profile image
Gambit62Administrator in reply toLynsuk

Thanks Lynsuk. The amount you are taking isn't exactly what most of us here would regard as high strength at only 4xRDA.

It doesn't sound like you have an absorption problem but that doesn't rule out something else going on that is affecting your bodies ability to use B12.

However,

a) The symptoms of B12 have a huge overlap with other conditions

b) Elevated B12 in the absence of supplementation can be an early indicator of some kidney and liver problems

c) do you know what other vitamins were like - may be worth getting a copy of the full blood test results. B12 works closely with folate - B9, so if your folate level is low your body may have problems processing B12.

Best form of folate is from dietary sources so if it was at the low end of the spectrum then worth looking at your diet. Fresh fruit and veg are good for folate. Fish, Dairy and Meat are needed for B12

d) It might be worth trying to cut out gluten and see if that helps - it does help some people.

Has the vit D defiicency resolved itself?

Lynsuk profile image
Lynsuk in reply toGambit62

They haven't mentioned anything vit d so I presume so, but can't say for certain. When the Dr read out results over the phone he said all other results were clear, including liver from what I remember and made it clear there was no disease. I'm expecting a phone call from another Dr this afternoon regarding the whole issue but at a loss what to say to be honest. I'm extremely anxious and paranoid about it all which I can only assume is a symptom of whatever is going on in my body, I can't stop thinking and stressing about it, it's ruining my christmas :( I can't help but overthink and over analyse every symptom in my body.

Gambit62 profile image
Gambit62Administrator in reply toLynsuk

Good to have confirmation that your liver function is okay - and good that GP has checked it out.

Whilst the anxiety possibly isn't helped by whatever is going on it is actually a normal reaction.

The bit of the brain that deals with fear and threats is pretty primitive and still stuck in the days when it was a question of 'fight or flight' as the way of surviving. Basically the brain sends you images of the consequences of whatever the problem is in the hope that you will either hide until it goes away or be able to outrun it. A good strategy with the bear at the back of the cave but not good when it is stress of modern life - or a health worry. That's why you are dwelling on what could possibly be wrong. It's really a feedback loop as the first thought gets you stressed so the brain intensifies the message and ...

Realising that you are in a feedback look can help because that gives you a way out - realising that the thoughts aren't about the illness but actually about the fact that you are stressed, and what you need to do is respond to acknowledge and respond to the stress and do something different that makes you feel less stressed (not sure Christmas quite falls into that category :)). It won't stop the thoughts coming back but it does give you a way of retraining your automatic response to acknowledge and do something else rather than the spiral of increasing anxiety you are caught in. ie you can't stop the thoughts coming but you do have a choice about how you react.

This is something I used when my depression and anxiety were really bad and I was constantly experiencing thoughts of death which just got me more and more stressed and made it almost impossible to do anything else. I thought it would take months to retrain the response from

a) why am I having these thoughts? which made me more stressed and made things worse

- to

b) thank you brain for telling me I'm a bit stressed. I'm going to go and do something else now. I still get stressed at times but now the automatic reaction when I have a thought about death is 'hey up - stressed - need to relax' ... and the first time round took a few weeks for that.

Hope you understand what I'm trying to say and hope it doesn't come across as 'pull yourself together' .... it isn't necessarily easy and it may not work for you but it's wroth giving it a try.

pvanderaa profile image
pvanderaa

There is no such thing at too high for B12 since it is a water soluble vitamin.

Do you also supplement with folic acid? This works with B12 as part of the metabolic loops for methionine and folate.

Your urine should also be dark orange if your B12 is high and you are stressed.

Lynsuk profile image
Lynsuk in reply topvanderaa

My urine was a bright yellow colour for a while but doesn't seem to be now (I'm off the multi vits)

Just took a look and folic acid (200 cg) is included in the multi vit which I assume I would take 2x a day. Thank you

Gambit62 profile image
Gambit62Administrator in reply toLynsuk

ok that answers the question about other vitamins in the supplement ...

If the supplement contained beta-keratin - a lot do - that could be what turned your urine bright yellow ... or it could have been something else.

humanbean profile image
humanbean in reply toLynsuk

Bright yellow urine always happens if you supplement with riboflavin (vitamin B2). Your multivitamin would have contained it. It doesn't cause any problems.

en.wikipedia.org/wiki/Ribof...

pvanderaa profile image
pvanderaa in reply toLynsuk

For me the daily multivitamin along with 4x 400 mcg of folic acid - twice a day - 3.2mg total is the level I need to balance the B12 and maximize it.

The max folic acid by prescription is 5mg daily but I can't handle this level.

Each person is different so you need to determine your level

fbirder profile image
fbirder in reply topvanderaa

There is a problem with very high levels of B12 if there is no good explanation for them (like taking large amount of supplements). It can be indicative of a variety of fairly serious conditions - ncbi.nlm.nih.gov/pubmed/146... -

Now, this abstract doesn't say what it means by 'elevated levels'. Nor do I know the levels one might expect to achieve by taking just 20ug a day (about five times the recommended daily amount). And 1380 (units?) wouldn't be considered very high by many of us here. So there's almost certainly no need to worry.

However, just to be sure, I'd stop the supplements for a while then get re-tested.

As for urine colour! You'd have to be eliminating vast amounts of B12 to change that. The biggest factor involved in the colour of your urine is - how much fluid do you consume? If it's a dark orange then you probably need to take on more water. If the supplements have changed the colour than it's much more likely to be B2. Your tablets will have about 1000 times as much B2 as B12.

Lynsuk profile image
Lynsuk

Just thinking, could taking multi vits before a blood test affect a reading? I normally take my multi vits etc in the morning and my blood test was about half 9. I may have had a smoothie with added spirulina/chlorella that morning too, I don't always but it's a possibility.

Sleepybunny profile image
Sleepybunny

"When the Dr read out results over the phone he said all other results were clear, including liver from what I remember and made it clear there was no disease"

Hi Lynsuk,

I get all my blood tests as paper copies after learning from experience that what I was told over the phone was normal, sometimes wasn't when I saw the copies. most surgeries will charge for making copies.

Link belwo is to a page about testing for B12 deficiency which may be of interest to you.

b12deficiency.info/b12-test...

Polaris profile image
Polaris

Hi Lynsuk

There is not enough B12 in a multi supplement to make a difference if you are B12 deficient and, therefore, it is slightly puzzling why your GP has told you to come off the supplements, especially as the serum B12 only measures what is in the blood and not whether it is absorbed into the tissues. You cannot overdose on B12.

Contraceptive pills and beta blockers, as well as many other medications, deplete vitamin B12, so it is possible you could still have a deficiency. Spirulina also contains analogues to vitamin B12. Your anxiety could well be down to stress and hormones but here are some links that may help:

b12deficiency.info/signs-an...

chriskresser.com/what-every...

cmim.org/pdf2014/funcion.ph...

Lynsuk profile image
Lynsuk in reply toPolaris

Thanks Polaris. Pretty confusing I know. I wonder if a combination of stress, taking a progesterone only pill, (then coming off it) hormone problems and multi vits as well as the algae foods have attributed to my result. My symptoms point to low b12 though so im pretty confused!

Lynsuk profile image
Lynsuk in reply toPolaris

Something interesting has now developed, I now have oral thrush! I notice this happens when I stop taking supplements. I'm now thinking the drs are wrong and it's low b12, masked, like you said but supplementation. Now, how to make them retest? I'm guessing they now think I'm a hypochondriac!!

Polaris profile image
Polaris

I've pasted the link to the latest BMJ research document again as it didn't work.

You will see from the summary on page 2 that you can still be deficient even though serum test result is high and, indeed, this was the case with my relative, whose result was skewed by supplements and masked by high folate. If you have other neurological symptoms with anxiety, it would be advisable to ask for MMA and homocysteine to be tested:

cmim.org/pdf2014/funcion.ph...

pvanderaa profile image
pvanderaa

To clarify my previous comment about the color of urine: with all things being equal ... (i.e. same amount of fluids) for me, on the day I take my injection, my urine is darker (more red/orange). Also on days when I'm more stressed, my urine is also darker (more golden coloured).

I use both of these symptoms to confirm in my mind what has occurred in the previous 6 hours. And to confirm my B12 level is still ok. If my urine becomes pale I know I'm low on B12.

I inject cyano-b12 every 3 days and with "normal" activity, I seem to consume B12 at a fairly regular rate. Some days more than other days - the primary difference for me being the level of stress, physical or mental activity on the day.

Refering back to the context in which I wrote the comment. If your B12 levels are normal and you are stressed, your urine should be dark. A normal color on the other hand, while being stressed, would indicate you need more B12.

Hope this clarifies the intent of my comment.

fbirder profile image
fbirder in reply topvanderaa

Coloured urine has been reported in those that had B12 as an antidote to cyanide poisoning. But I've been unable to find any peer-reviewed articles that mention it in any other situation.

Of course, as an antidote to cyanide one would be given 5,000,000 to 10,000,000 ug, intravenously, in a single day.

Posting stuff that tells people that they need more B12 if they are stressed, yet have normal urine colour, is pure FUD and is only likely to get normal people more stressed.

pvanderaa profile image
pvanderaa in reply tofbirder

I guess that depends on how one defines "normal". If someone is producing enough IF to recycle B12 in the gut, stress is no big deal.

For the rest of us who don't recycle B12 in the gut, blood levels of B12 may need to be >1500pg/ml to feel "normal". The regular range of b12 for everybody else no longer applies and Drs are prone to remove B12 when they see it is above 900 pg/ml.

I realize you need peer reviewers to validate your treatments but there is no "one size fits all" for B12D. Each person is different and needs to find what works for them. Hopefully, they

Urine color is one of the simplest, least expensive "tests". Yes - it is subjective. But used with a log book I found it can be quite effective in understanding what is occurring on the day a new symptom shows up.

Understanding the situation does more than anything else at eliminating worry and relieving stress.

fbirder profile image
fbirder in reply topvanderaa

My B12 is over 6000 pg/mL and I am often stressed. If I were to believe you then my normal urine colour means that I need even higher levels.

Balderdash

Binky68 profile image
Binky68 in reply tofbirder

Fbirder did you get anywhere with this? I dint supplement , am vegetarian and my b12 serum is 6000 and active b12 1100.

19 years ago my b12 was so low I had to have two injections but none since .

I've had mma and homo done and they're both mid range .

Anyone any thoughts as to my suddenly 10x normal serum levels ?

I too have elevated b12 of almost 1800. I’m waiting to do more blood work

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