Continually high B12 blood results: Good morning... - Thyroid UK

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Continually high B12 blood results

Sleepman profile image
14 Replies

Good morning wise kind ones. Trying to help my Mum who is 77.

She is autoimmune underactive and zero gluten like me.

Her B12 is very high and is always high.

It is 200 % of range. 1310 range 197 to 771. It was higher in summer.

Doctor not concerned.

She bruises easily and is on blood thinners due to deep vein thrombosis previously.

She has had a recent flare up of PMR but a few days on steroids prednisone has sorted it (5mg)

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Sleepman profile image
Sleepman
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14 Replies
greygoose profile image
greygoose

What is her folate level?

Sleepman profile image
Sleepman in reply togreygoose

Folate 11.8 in range 21 to 260 (was 58 in summer)

greygoose profile image
greygoose in reply toSleepman

OK so that's not the problem, then. But that's a huge drop in levels. Was she eating lots of salads in the summer?

helvella profile image
helvella in reply togreygoose

If it is as it appears to me, 11.8 is only just over half way from zero to 21 - bottom of reference interval (range), that is a problem!

greygoose profile image
greygoose in reply tohelvella

I don't think I was quite awake when I wrote that... But if the range is 21 to 260 - which seems a strange range for folate - then 11.8 is below range.

Sleepman are you sure that's the right range? Because 11.8 is usually ok for folate.

Sleepman profile image
Sleepman in reply tohelvella

I have ranges messed up on folate and summer result

- NHS results are excruciating to get out of the app

Folate deficient less than 3.9 ug/L

June 7.8

Nov 11.8

Both noted as slightly haemolysed which can falsely increase result

But likely folate OK then.

Sleepman profile image
Sleepman

No not a massive salad eater but not a salad dodger ... reasonably veg intake

radd profile image
radd

Sleepman,

VitB12 is not toxic in itself, hence we supplement/inject high amounts. However, conditions such as liver disease (meaning impaired VitB12 storage)and kidney disease (that causes poor renal clearance), etc, can cause elevated VitB12.

Equally some people are genetically programmed to just work better with high VitB12, but it might be prudent to get her GP to run some labs.

posthinking01 profile image
posthinking01 in reply toradd

Agree the liver will throw out B12 and make the levels high if it cannot metabolise - clever old human body !

Sleepman profile image
Sleepman

Radd, thank you ... making more sense.

Here liver and kidney blood tests came back clear, they have done several of these of last 8 months.

radd profile image
radd in reply toSleepman

Sleepman,

There’s also research into elevated VitB12 being a biomarker for certain cancers that kills cells releasing VitB12 back into the blood. Has she had basic labs for this?

humanbean profile image
humanbean

Before I ever took B12 supplements of any kind I had symptoms which suggested I had B12 deficiency but my levels were always well in range.

Now I have high B12 all the time. It has been as high as > 2000 ng/L but I haven't had any obvious problems from that. When I first raised my B12 with methylcobalamin (an active form of B12) it helped to cure a couple of life-long problems I had - eczema and spots, and eliminated the symptoms of B12 deficiency I had. If I allow my B12 to drop my skin problems come back.

I had previously (about 15 years ago) taken cyanocobalamin (an inactive form of B12) and it did nothing for me at all. So now, I make sure that any B vitamins I take are of the active form.

jigsawhealth.com/blogs/news...

These links are relevant to having high B12 levels :

stichtingb12tekort.nl/engli...

researchgate.net/publicatio...

If B12 is taken in supplemental form it can raise B12 levels very high and this is believed to be safe. But some people who never take B12 are found to have high levels of B12 and this is not always a good sign, as explained in both of the above links. It can suggest that the liver is no longer able to hold on to its store of B12. I'm not sure how someone with high B12 from supplements can tell when their high B12 level is also caused by something unhealthy.

.

Another thing to consider...

For the body to make use of the active B12 it has it needs adequate levels of folate. Doctors will usually suggest taking very high dose folic acid if folate is low but this is a synthetic, inactive form of folate that depends on the patient's ability to convert it to its active form to do much good. Folic acid was first developed in 1943 and about 50% of the global population can't convert it very well, or they do it very slowly. Folate and folic acid are NOT the same thing, but it is often the case that doctors and researchers will use the terms interchangeably, which is very annoying. And excess folic acid causes health risks :

web.archive.org/web/2024022...

drfuhrman.com/blog/16/why-y...

philmaffetone.com/folate-pl...

chriskresser.com/folate-vs-...

Personally, I try to keep my folate levels at about 20 mcg/L. I make sure I avoid folic acid and supplement with methylfolate when necessary. The body doesn't store folate so it has to be topped up with appropriate food or supplements every day or every week.

Food sources of folate :

healthline.com/nutrition/fo...

Sleepman profile image
Sleepman in reply tohumanbean

Thank you so much everyone for input. I am concluding everything is OK ish with slight concern over cancer comments from Radd. Doctors have tested liver and kidney function.

Thank you @humanbean for taking the time to share your learnings .

Done some more digging and found some results going back nearly 4 years.

B12 has been wandering from high to very high for years.

Folate rarely at 20 as humanbean sweet spot

Ferritin - does the forum look for about 100 on this ? I will search on this anyway.

Again thankyou everyone for taking the time to help.

Mums back results
humanbean profile image
humanbean in reply toSleepman

Are you supplementing B12? If yes, in what form and how much? And what about folate? Are you supplementing that? If yes, in what form and how much?

You appear to have the same problem with folate that I do. It fluctuates wildly and I find it very difficult or impossible to keep it at a steady level. I just do my best and hope for the best.

I don't ignore the possibility of something serious, like cancer, happening and showing up in my B12 results. I feel better with a high level of B12, so it does make it harder to see what my results are telling me when I'm deliberately keeping it high, while a high level could also be telling me that my liver is leaking B12 into my bloodstream because I have an unknown cancer somewhere.

I have decided for my own benefit, that if I stop taking B12 every now and then for a few weeks, then test my levels it should have dropped a bit. If it hasn't dropped I think I would be worried because not dropping might suggest that my liver is losing my B12 into my bloodstream and keeping my test results high that way. But this is a completely unscientific thing for me to say because it feels like I'm just making something up for my own benefit. But what else can i do? I don't want to permanently drop my serum B12 level below 1000 or my active B12 level below 150. So I use the really unscientific method of keeping my fingers crossed.

As for your ferritin, it does look as if it is dropping over the years.

According to this link :

thyroidpharmacist.com/artic...

Normal ferritin levels for women are between 20 and 200 ng/mL. According to some experts, ferritin levels of at least 40 ng/ml are required to stop hair loss, while levels of at least 70 ng/ml are needed for hair regrowth. The optimal ferritin level for thyroid function is between 90-110 ng/ml.

Males generally have higher levels of ferritin than females but I don't have an optimal level for men.

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