B12 too high?: Hi, I was wondering if my latest B... - Thyroid UK

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B12 too high?

Andyb1205 profile image
27 Replies

Hi, I was wondering if my latest B12 results are normal or too high. To get a better picture here were my previous results.

457 (156 - 698) June 2014

166 (153 - 655) August 2016

After self-supplementation of methylcobalamin

> 1476 (153 - 655) December 2016

I'm wondering if I should stop supplementation or simply reduce the amount. Thanks.

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Andyb1205
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27 Replies
humanbean profile image
humanbean

Your level isn't too high in the sense of being dangerous - Vitamin B12 isn't dangerous. The only problem you have is that by continuing to supplement you are potentially wasting money.

I'm assuming that you had symptoms because of B12 deficiency in August 2016, and that your symptoms have improved since you started supplementing.

You could, if you wanted to, stop supplementing for a while, monitor your symptoms, and if you think any of your symptoms are getting worse or are coming back, then start supplementing again, either at the same dose you've been on or reduce it.

000ggg profile image
000ggg

I stopped mine because my b12 jumped from 1100 or so to 2800 or so in 3 months with no changes in dosage. I don't take it at all now. I'll see how my next test is.

BirgitteG profile image
BirgitteG in reply to 000ggg

What did your GP say about it?

bluebug profile image
bluebug in reply to BirgitteG

No point asking a GP as everyone on here who has GP freaks out.

It's also well known - it's even in the NICE guidelines - that once you start supplementing with vitamin B12 a "normal" blood/serum vitamin B12 is of no use. You need to have an active Vitamin B12 instead. This is more expensive so rarely done on the NHS especially as only one lab is known to do it.

BirgitteG profile image
BirgitteG in reply to bluebug

Very high b12 can be indicative of some underlying condition, I have heared, that's why I ask. Maybe wise to take up the issue with her/him anyway?

bluebug profile image
bluebug in reply to BirgitteG

Not if you are supplementing.

If you aren't supplementing and have a high B12 then yes it needs investigation. If you are supplementing the inactive B12 test just shows you are taking supplements.

BirgitteG profile image
BirgitteG in reply to bluebug

Thanks ☺

000ggg profile image
000ggg in reply to BirgitteG

Brigitte you're right. It can be indicative of cancer and other conditions. My hematologist said it wasn't high enough for that, you need to get very high to worry, and my other related blood work was ok. My endo was sure it was a mistake but another lab got the same result.

000ggg profile image
000ggg in reply to BirgitteG

You're right- it can be cancer or other conditions. My hematologist said it needs to be much higher- like above 10,000 I think for that and my other related blood work was ok. The endo thought it must be a mistake at the lab, but what about the others? Lol. It was just at high next time at another lab.

BirgitteG profile image
BirgitteG in reply to 000ggg

Glad to hear that ☺☺☺

000ggg profile image
000ggg in reply to BirgitteG

oops... sorry to reply so many times.. I was on my phone and they weren't showing up.. lol :-)

000ggg profile image
000ggg in reply to BirgitteG

I never see my gp she's hopeless anyway. I will see the endo soon. He didn't say anything but did some tests for functional b12 deficiency which were normal. I have no reason why it's so high. It was that high for the past 2 tests. I'm curious to see what it will be now. I have low D also.

The endo thought it was a mistake but another lab got the same result later. My hematologist said it needs to be much higher to worry about other things like cancer and my other related numbered were good. I will see what it is next time and ask again if it's higher with no supplements. I do have a lot of itching too, and rashes but I have had that on and off for many years... ugh.

jamesal0 profile image
jamesal0

Hi Andy

Worldwide the B12 range is suspect.

200 – 900 pg/mL in the United States

135-650 pmol/L in Australia

500 – 1300 Japan

There is plenty of evidence B12 deficient (sick people) have been included in these "normal" ranges and skewed the numbers down. Re your 1476 - how do you feel?

I am getting monthly B12 injections, and return 900pg/mL a month after an injection, so 2 days post jab I might be twice that.

I feel much sharper mentally. Though that wouldn't be hard after having had Levo brain fog for the last 2-3 years

James

Andyb1205 profile image
Andyb1205

My GP had said that my level of 166 (range 153 - 655) was normal, so I self supplemented. So I'm assuming next time I see him he will say it's too high and I should stop supplementing immediately. But I wanted advise of those who have supplemented, after getting to a good level can it be maintained through diet alone?

Hillwoman profile image
Hillwoman in reply to Andyb1205

Andyb, 166 is nowhere near optimal, never mind normal. Did your GP test antibodies for intrinsic factor and gastric parietal cells? What are your homocysteine and methylmalonic acid results? The latter two should always be tested before supplementing with B12, because they are an indirect way of determining cobalamin deficiency at cell level.

It may be possible to replete B12 through diet, but your original result was so low that you may have a form of chronic malabsorption. For more info, head over to the PAS forum, another HU community.

Treepie profile image
Treepie

There can be some minor side effects from excess such as itching.

Posters on here generally recommend being around 900-1000.

HLAB35 profile image
HLAB35

Provided that you're not getting symptoms I wouldn't necessarily reduce the dose - serum levels of b12 are not a clear indicator - they're actually pretty crude and GPs saying that any level is 'fine' from a blood result when there are clear neurological symptoms is basically copping out. If anything, it could be that you're struggling to absorb it. It's the spinal fluid that needs it and for many of us the transfer from blood to nervous system is impaired. Make sure that you are taking methyl folate as well - maybe it's not getting absorbed because you're not supplementing enough with the vitamins and minerals that work with it... I'd generally go for a quality B-complex and multi-minerals as well.

AmandaK profile image
AmandaK

Wondering what your folate levels are before and after supplementing?

I have naturally high B12 levels but folate is always languishing at the bottom of the range, whicb is most odd. I now see a naturopath who thinks that i am someone whose body needs high levels of B12 so has advised me to supplement. The upshot is that levels are now over 1000 but it does mean the folate levels are much better.

Sarah Myhill reckons that B12 could go as high as 2000 (presumably with supplementation) if it helps with symptoms.

So, it could be that you need high levels but as others have said, it may be best to monitor and gauge symptoms.

Kenbowns profile image
Kenbowns in reply to AmandaK

What were your symptoms when your levels were at 166 ? and have they improved at all now that your serum b12 is higher ? if your symptoms are improving then you must be doing something right, it is this that is the key indicator not the blood result.

Yes your gp will probably tell you that your b12 is dangerously high....mine did, but then again he also told me that my levels were normal when they were only just above the bottom limit, I had masses of neurological symptoms but all he was looking at was the serum b12 result.

I would think that most people would need higher b12 levels than just bumping along at the bottom of the range but the gps don't care about that, as long as you are inside the range limits you are deemed to be normal.

posthinking01 profile image
posthinking01

In my opinion stop taking it as the liver can be compromised if you dont need it.

mistydog profile image
mistydog in reply to posthinking01

Where do you get this from? Excess is excreted.

Summer64 profile image
Summer64

Interesting read. I supplement with a B complex at times and I thought you excreted what you didn't need. To be that high sounds as if it's stored.

Learner1 profile image
Learner1

1200 to 2000 is fine if you're supplementing. A more accurate test is methylmalonic acid. Our local hospital tested my moms B12 at 1200, but her MMA was very low.

Other numbers that may be useful to watch are homocysteine, FIGLU, methionine, cysteine and glutathione, which could indicate problems with how folate and B12 are used. You may also need cofactors like B2, B6, and magnesium.

Also, if your B12 was very low for awhile it might be wise to test heavy metals, like lead, arsenic, mercury, cadmium, etc.

Serendipitious profile image
Serendipitious

My B12 has been high for a few years now and I never used to supplement. In June 2016, it was 940 ng/L (180-914). So it was above range and the GP always asks me whether I'm supplementing. In the last few months I've started taking a supplement containing a B complex and Relora in the evening as that's the only thing that helps me sleep. It contains a very high percentage of B12. I've got my 6 month blood test coming up next month. It'll be interesting to see what it's risen to.

Learner1 profile image
Learner1

Ask to have homocysteine tested too.

Andyb1205 profile image
Andyb1205

Hey everyone thanks for the replies very helpful. I've actually never had my folate levels tested but I will be seeing the doctor today and ask him to do that. I will also request tests for intrinsic factor, parietal cells, and methylmalonic acid at the very least. I was wondering, will having gone ahead with the B12 supplementation earlier affect the accuracy of the results of these tests? I have stopped supplementing for almost a week now.

I will also be asking the doctor for a full thyroid panel and see if my numbers have improved after increased B12 and Vitamin D which I was diagnosed as deficient in but is now in upper normal range after supplementation. Last time I checked my TSH was normal (years ago was 5.3, then 4.2 and recently 2.3) which T4 in low end of normal range and T3 went from low end of normal to below the range months ago. But yes I do suspect some problem of malabsorption. I feel the doctor has been trying to plug the different leaking holes in the boat when the material of the boat itself may be the problem rather. Anyways thanks!

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