Blood test results show my vitamin B12 level is 2000

[Cher-2000]

I'm a Senior female who recently had a blood test that shows a high level of vitamin B-12. The level is 2000. I have never taken the B-12 shots only multi vitamins. I have diabetes and have read that a high level of B-12 could be linked to diabetic kidney cancer. What test do I need to ask for to see if this is a possibility?

[Gambit62 Administrator]

I'd recommend that you actually speak to your GP about the result and what investigations are appropriate.

Although it has been suggested that high B12 levels could be used as an early indicator for some conditions affecting the liver and kidneys it isn't formally recognised as a diagnostic tool in this area and there are other potential reasons for the elevated levels of B12. Your GP will probably need to refer you to a specialist for further testing.

Possible that you might get more support posting on other forums that are more directly related to cancer. This is one of the dozen or so that comes up if you go to the search communities (under the 'my communities' menu on the top bar) and put in kidney cancer

healthunlocked.com/jameswha...

you may get a more precise response in relation to diagnosing a kidney problem there.

[brad21 in reply to Gambit62]

This mqay be a little off topic so I apologise. Is thickening of the ileo caecal valve in the bowel a complication of taking for example Vit B12 and or ferrous sulphate? Many thanks

[Gambit62 Administrator in reply to brad21]

honest answer is that i have absolutely no idea - had never actually heard about the ileocaecal valve before your query - not a medic and tend to look things up and learn about them as needs arise but it is quite a fascinating topic - and could explain why we get some people reporting swelling in legs as that would fit with the valve not closing properly.

The valve is actually a muscle so I'm not sure that either B12 or ferrous sulphate would directly cause a thickening ... and I didn't have time to do enough research to fully go in to what might cause problems with the valve opening and closing.

[Lilnicki]

This could also be functional B12 deficiency where one of the transporters doesn't carry the B12 from the blood across into the tissues, so it gets stuck in the blood. The blood level will show as normal or high. Do you have any symptoms particularly neurological ones ?

[Gambit62 Administrator in reply to Lilnicki]

I may be wrong but I think that Cher-2000's concern is about what is causing the high levels of B12 as she hasn't supplemented and it is very unusual for levels to be that high without supplementation.

[Katiemelissa in reply to Lilnicki]

Hi Lilnicki, this was my situation. My serum B12 was over 2000 (unreadable I was told) however I actually had pernicious anaemia due to the fact b12 did not reach the mitochondria and was being 'stored in the blood'. I had loads of symptoms including neurological - great answer!

[Cher-2000 in reply to Katiemelissa]

How do you get tested for PA?

[Katiemelissa in reply to Cher-2000]

I was not actually given a 'test' as such because the way the NHS evaluated pernicious anaemia back then (when I was diagnosed) was basically useless (as per my doctor at the time).

Since then the NHS have given up doing that blood test to determine B12. Other indicators such a Methylmalonic Acid test and Homocysteine Test which could prove useful in our circumstances are unfortunately not given by the NHS.

My diagnosis was made on symptoms and clinical findings by my haematologist and gastroenterologist. Due to what was found, it was agreed that I could be treated on an empirical basis by the NHS for the deficiency of B12.

There are many different avenues within the body that can go wrong prior to getting B12 into the mitochondria and it seems to me that, because of this, many doctors these days like to refer to the condition as 'B12 deficiency' rather than 'pernicious anaemia'. I have had both terms used by the medical profession about me.

However, in my opinion at the end of the day, I believe that any symptoms that are caused by a deficiency in B12 within the body needs to be treated with a cobalamin of your own choosing. By that I mean whatever works best within your body should be used, however our NHS only gives Hydroxocobalamin which is great if it suits you but is useless if it doesn't.

[ladyhotwheels in reply to Katiemelissa]

Hi katemelissa, do you mind if i ask what your neuro symptoms were?

My b12 was tested and came back elevated. I have been really lightheaded lately, with alot of "head fullness", loss of balance, shortness of breath and heart palpitations. I am having several others tests done. I know that elevated b12 can be an indicator for other serious issues so I am hoping it is just some come of functional deficiency.

[Katiemelissa in reply to ladyhotwheels]

Hi ladyhotwheels,

I was basically getting all the symptoms you mentioned plus hypothyroid, violent migraines, vomiting, numbness, having falls, skin problems and many, many more.

I discovered that high B12 was associated with quite a few terminal cancers, however when I questioned my consultant about these I discovered that he had also queried them but happily announced that if I had been suffering from any of them, then I would be 'well dead by now'. This would have been comforting had I not been 'fobbed off' by the NHS for the previous ten years, only to have them 'panic' when they finally realised what I was telling them and the possible seriousness of my elevated B12.

I discovered that many of the problems I had (for decades) were due to functional deficiencies and having dealt with them (eight years ago) all the 'symptoms' pretty much disappeared (including hypothyroidism).

This is not to say that the conditions we suffer from will go away (PA etc), but certainly many symptoms can be dealt with in this way. I am sure that what worked for me probably wouldn't do the same for you unfortunately, but I encourage you to discover as much as possible about your own health and discovering your methylation pathway wouldn't do any harm (don't bother NHS doctors with this as they are still in the process of learning about it and are of no use at present).

Please don't give up.

My best wishes for your future health.

[Ncas0104 in reply to Katiemelissa]

Hey Katemelissa can you message me when you get a chance please, I have a few questions for you.

[Katiemelissa in reply to Ncas0104]

Hi Ncas0104,

If you personal message me, I will try my best to answer your questions. Sorry about the delay in replying, kind regards

[Lilnicki]

Functional deficiency can be a cause of high B12, but yes all causes should be looked at. It's good to have information from different people on their own experiences as one of them may be relevant to her.

[Gambit62 Administrator in reply to Lilnicki]

it isn't clear from Cher-2000 post whether or not she actually has any B12 symptoms and it is quite likely that she may not, though you are right that she could.

[Cher-2000 in reply to Gambit62]

Hi... What symptoms do I need to know?

[Gambit62 Administrator in reply to Cher-2000]

symptoms of functional B12 deficiency will be the same as those of B12 deficiency

pernicious-anaemia-society....

there is quite a lot of overlap with diabetes eg diabetic neuropathy so may be difficult to unravel what is going on

[SlowDragon in reply to Lilnicki]

I am interested in this concept of functional deficiency.

I have Hashimoto's (hypothyroid) - eventually after long sorry tale of inadequate treatment on NHS, I did (as many others on thyroid Uk do) get a full thyroid plus eleven test from Blue Horizon, about two years ago

This showed very high above range B12 & top of range folate. I had never supplemented either. (Most with Hashimoto's have low B12 - so I was very surprised)

But same test revealed I had very low vit D, low magnesium also revealed once I tried supplementing vit D.

Started gluten free diet, & I was able to stop propranolol - been stuck in that over 17 years (propranolol lowers magnesium)

A high percentage of Hashimoto's patients are gluten intolerant

hypothyroidmom.com/92-of-ha...

On vitamin D & magnesium, my B12 & folate started falling.

Cutting long story short. About a month after started supplementing vitamin D this caused/revealed low B5. (Peripheral neuropathy) so started taking vitamin B complex .......soon after revealed low B12 (severe pins & needles)

Now improving on B12

drgominak.com/vitamin-d-hor...

[fbirder]

Gambit62 is correct - you need to see a doctor about this. There are many possible causes of elevated B12 - various cancers, liver disease, autoimmune problems, malaria, diabetic renal disease - degruyter.com/view/j/cclm.2... - some of them scarier than others. Differential diagnosis isn't likely to be a single test.

[fbirder in reply to fbirder]

Here's another paper that talks about a functional deficiency being possible with very high B12 levels. The high levels can be caused by an excess of haptocorrin (the protein that binds B12 in an inactive state). qjmed.oxfordjournals.org/co...

It includes a flow chart for various tests to distinguish possible causes.

[Cher-2000]

Thanks so much for the information. What I didn't mention is that I have two MTHFR genes...the famous ones which as you know can cause a methylation problem, poor absorption of nutrients and vitamins and minerals. I've read that I need to get a Active B-12 test to determine how much B-12 I am absorbing into my cells. I will be calling my Dr. tomorrow to ask for the test. Then I'll go from there. Thanks for being there and giving me feedback to try to figure out what's going on inside my body.

[fbirder in reply to Cher-2000]

The active B12 test is unlikely to help unless you're trying to figure out why you have symptoms of a B12 deficiency despite such high serum levels. If you are trying for that then an MMA test is more likely to prove useful (although both are highly likely to give normal results).

The MTHFR mutations, unless they're both the C667>T mutation (i.e., you are homozygous) are very unlikely to have any effect. Some people who are homozygous (a very small proportion of the population) will benefit from taking methylfolate instead of folic acid. The mutations will have zero effect on the absorption of vitamins and minerals.

[tweetybird1121 in reply to Cher-2000]

My Mother in law had pernicious anemia and vitamin b-12 shot for seven days straight then once a month fixed her right up. Felt brand new. Good Luck . Only suggesting no dr here.

[Spooniegirl in reply to Cher-2000]

After thoroughly reading this thread I'm shocked at the similarities. I am a 22 yr old diagnosed w/ Hashimoto's, hypothyroidism, and addison's disease. I have asthma, mthfrc667t, scoliosis, and have also suffered from b12 deficiency for years from having autoimmune issues and mthfrc667t which disrupts absorption as many of us know.

I had my blood done in August and remember my b12 being at 1350 but didnt think anything of it because I hadnt read anything and my dr wasnt concerned whatsoever even tho I havent been on methylated injections in 6+ months.

The last month my health has been rapidly deteriorating. I deal with my "daily bad" every day, living w/ hashis and addisons. It's a lot. I know how it affects my body and I've been familiar with my illnesses for 3+ yrs now.

Back to my health deterioating; when I say I'm like a useless pancake, I mean it. Since the new year 2019, I'll say, I've been dealing with a severity of bone pain (which has been my norm for a yr about but no cause has been determined), I have dealt with insane night sweats every night like dumping sweat EVERY NIGHT. And all day for that fact. But I'm fatigued more than I've ever been and I have "chronic fatigue". I am basically bed ridden not only from utter exhaustion, but my bones in my hips down to my ankles hurt so bad to walk, its unbearable pain. Then the chest pains and shortness of breath came on followed by severe swallowing issues, coughing up mucus & bloody mucus at times. Severe abdominal pain and swelling to the point I'm not really eating because it hurts so much. Constant bathroom issues. Weight loss, weakness to where I can hardly hold my phone. My quality of life, usually is hard, but this....this is like the rest of quality of life I had was stolen from me overnight. I experience all over severe numbness, chest pains and shortness of breath. Yesterday I had left arm pain, central chest pain and nausea for 6 straight hrs.

I have been to the ER 2x in the last 2 weeks because my PCP thought I could have a clot in my lung since I was coughing up bloody mucus + chest pain, shortness of breath, nausea, abdominal pain. He wanted a CT scan done and they wouldnt do one. Just did x ray of chest. Dont know if there was a clot? Discharged on anxiety. Happens again a few days later and the symptoms get really bad so I go to a different hospital as advised from PCP.

Discharged on anxiety. EKG always comes back normal and these chest pains are legit not from anxiety. I have routine panic and anxiety attacks so I know the difference, which I dont even get chest pain from anxiety, you just feel like you cant breathe sometimes.

My blood was drawn both times and I have elevated calcium, white blood cells, low-ish red cells. And this time they checked my b12 which is at a 1600! I havent been on injections or supplements for 8+ months now and my diet is basically nonexistent and I told my PCP about this because getting my b12 up has always been a struggle and she wasnt worried at all and I am honestly dumbfounded that no one is even going to investigate? Shes like "oh it's from your diet! No worries!" When legit my diet has never been worse in my life. I am not eating. If your b12 is that high and its diet-related, it's because you're eating hella leafy greens and fish and all the good stuff. I'm malnourished and have not been taking vitamins.

In the last month I have also gotten moles all over my body that were never there before. Some are already evolving/multi colored/ even one on my labia? And within the last 5 days I have developed very mild (almost microscopic, pin-head sized) petechiae, but it is still petechiae as it doesnt disappear when glass is pressed on site. I had a bigger petechiael spot (pen-head sized) on my hand for like the last 3 yrs and didn't think anything of it. 6 months ago I got another on my other hand. Didnt think anything of it. Now all of a sudden I have it all over my legs and arms, chest. And one spot on my face. Plus all these other symptoms and no one is concerned. No one is looking at the big picture of all my symptoms.

I've been experiencing severe neurological issues such as confusion, memory loss, speech issues (slurring, almost impossible to read aloud). Balance issues, I fell out in my backyard randomly like nothing caused it, 3 weeks ago. 1 huge random bruise 2 weeks ago. Everything is so weird and I am desperate for answers and help but none of the professionals around me are concerned or hearing me at all and I'm genuinely confused.

Ugh not to go on but I've also been dealing with right-sided issues for a month ie: ringing only in right ear, headache only on right side, feels like a lump in my neck on right when I swallow. Not to the touch, but when I swallow it feels like theres a golf ball in my neck if that makes sense? I've choked really bad this month which isnt like me. I have searing jaw pain in my right jaw only. My right shoulder hurts more. Idk I feel like I could keep going but my hands hurt and I need to stop typing.

Any insight would be so appreciated....

[Katiemelissa]

My serum B12 was over 2000 (unreadable I was told) however I actually had pernicious anaemia due to the fact b12 did not reach the mitochondria and was being 'stored in the blood'. I had loads of symptoms including neurological.

You will be lucky to get a holotranscobalamin test on NHS, I know I couldn't, but I hope you do. I have two of the MTHFR mutations (heterozygous for both) and I know I certainly respond incredibly well to folate rather that folic acid, but I also need methylcobalamin rather that hydroxo as I can't convert.

The methylation pathway is a complicated system and it takes an awful amount of research to reap rewards, however if you dig deeply enough you can do it.

Good luck!

[fbirder in reply to Katiemelissa]

but I also need methylcobalamin rather that hydroxo as I can't convert.

That's not very likely. With only one copy of the C677>T mutation your methylation efficiency should be around 80% of normal. And supplementing with methylfolate would fill the gap in the synthetic pathway to methylcobalamin.

[tweetybird1121 in reply to Katiemelissa]

Read above reply about pernicious anemia and b-12 shots. Good luck.

[Katiemelissa]

The only reason I made reference to the MTHFR polymorphisms was because they had already been mentioned. I have numerous homozygous single nucleotide polymorphisms some of which lay directly in portions of the pathway which had a direct influence on (but not restricted to) the health issues being discussed here. I had to deal with each one in turn. I didn't mention the others as I don't think it would be relevant and also make for pretty boring reading.

These SNPs don't work unilaterally unfortunately which is why it is practically impossible to advise someone about this without knowing all their SNPs from their complete genome. I always advise the assistance of a qualified health professional. Unfortunately our NHS is not quite there at present so it would probably have to be private.

There are a number of pieces of literature and health professionals who will agree with what I have said. Indeed there is a pernicious anaemia society meeting in Birmingham this December, the members of whom are very interested in why people like me can't convert things like hydroxocobalamin and thyroxine etc.

So I am sorry but I am living proof of someone who cant convert certain medications. It took me 16 years to research my health and although it was a hard slog it was incredibly fruitful in the end.

Everyone here has me very best wishes in finding the answers they need to their medical issues.

[Binky68]

please see my posts - my B12 id 6000 and active B12 660, normal MMA , normal homocysteine.

Symptons of low B12

[Josey64]

Hi Cher I been taking b12 for about year I was at 300 my b12. Dr put me on b12 tabs my levels went up to 2000 what she told me to do is take one every other day I even was feeling really tired it's kind of weird for being B12 I was fatigued and all that I feel better now but she hasn't checked my levels.to see if it went down. But going to my diabetic doctor Wednesday I will let her know if she checks my kidneys my liver and all that