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Very elevated vitamin B12 levels in four year old. Don't want to google.. Anyone know what it might really indicate?

(25 Posts)
navygravy Mon 25-Apr-16 11:00:17

4yo DS has had blood test for digestive issues: GP wanted to rule out coeliac, which was negative.

Every other result was clear except vitamin B12 which was over 30,000. GP said the upper limit for normal was 900.

He asked me to stop giving DS a multivitamin (bog standard supermarket kid's one). I asked if anything else could cause a result like that and he said yes, possibly "an issue with his bone marrow"

I've just checked the multivit packet and it doesn't even contain B12.

I want to know what else might cause it but the mention of bone marrow has put the right frighteners on me so I don't want to go down the wormhole of Dr. Google.

Any ideas?

FelicityR313 Mon 25-Apr-16 11:06:22

Has gp organised any follow up

navygravy Mon 25-Apr-16 11:08:12

He said to stop taking the multivit and come back in 3-6 months to repeat the blood test. But that seems pointless if the multivit doesn't have it in the first place confused

ButEmilylovedhim Mon 25-Apr-16 11:11:25

Go and tell them that. I'd want a referral to the hospital absolutely. Hope it's nothing serious flowers Kids, eh? Always a worry.

MarvellousCake Mon 25-Apr-16 11:12:17

Phone and tell them that. Make an appointment for follow up.

navygravy Mon 25-Apr-16 11:39:11

thanks, I've called - he can talk to me on Thursday afternoon.

I'll bury Google at the bottom of the garden until then.

Zaurak Mon 25-Apr-16 12:48:52

*
He said to stop taking the multivit and come back in 3-6 months to repeat the blood test*

Very poor advice from your GP. Supplements would NOT lead to levels this high. B12 is water soluble - you just pee out any extra. The liver can store it but just taking a multivitamin physically cannot give you levels that high alone.

This needs a full workup- push for a referral to haematology. They can investigate further to rule out various causes - there are some benign proliferative causes of high b12, so don't panic but it does need looking at. The fact your son has had bloods come back otherwise ok is a good thing.

navygravy Mon 25-Apr-16 18:25:57

Thank you Zaurak, I too thought the GP's response was a bit blasé. I am going to be v. firm on Thursday when I speak to him next.

AnotherTimeMaybe Mon 25-Apr-16 20:24:38

We've had high b12 - not as high as that though - and were told that it's not converted to methyl b12 which is what you need mainly for detox and also for some areas around speech and digestion. With the latter it's chicken and egg really as poor methyl b12 means intestines don't work properly and if digestion doesn't work you can't absorb b12 properly
You do need to follow up for your own sake but if you sort out digestion issues b12 might come down and start getting used properly x

hollinhurst84 Mon 25-Apr-16 20:28:35

My B12 was off the chart - but I was taking a high dose multi vit
Interestingly been referred to haematology for something unrelated and it turns out I'm neutropenic and will be for life more than likely. Whether it was linked or not I don't know

hollinhurst84 Mon 25-Apr-16 20:28:40

My B12 was off the chart - but I was taking a high dose multi vit
Interestingly been referred to haematology for something unrelated and it turns out I'm neutropenic and will be for life more than likely. Whether it was linked or not I don't know

navygravy Mon 25-Apr-16 21:04:39

Interesting about the digestion link anothertime. Poor old ds2 has very dodgy bowels. He's a strapping lad and full of energy so it doesn't seem to affect him other than the discomfort. And constant crapping.

AnotherTimeMaybe Mon 25-Apr-16 21:55:52

Does he have swollen tummy for a while after food? Is he constipated? What did the GP suggest you do for his digestion?

navygravy Tue 26-Apr-16 10:50:38

He said I should keep a food diary, which I've been doing anyway. Wondered if it was wheat-related but there doesn't seem to be a link. Not constipated, the opposite in fact - goes around 4-5 times per day. And oh, the wind! Which he's immensely proud of, of course. Being 4 smile

FelicityR313 Wed 27-Apr-16 00:05:50

He suggested a fucking food diary when your child has an elevated blood level 40 times the maximum normal count? A count which can indicate any number of things.

He also suggested that you come back in 3-6 months with no interim follow-up?

I'm sorry to say this navygravy, but you actually should be googling in this case to see what you might potentially be dealing with.

That, or googling a new GP. Might be a better use of your time to be fair.

FelicityR313 Wed 27-Apr-16 00:16:11

And I'm sorry to post this OP, but I think you need to be taking this a lot more seriously than your GP is.

I know you don't wish to google so I'm respecting that, but putting the 'in conclusion' line here to one piece I found:

"blah blah blah blah ................

Altogether it can be concluded that an observed elevation of cobalamin in blood merits the a full diagnostic work up to assess the presence of disease."

navygravy Wed 27-Apr-16 18:17:20

I have now done a bit of google-investigating. I didn't initially because I have pretty bad anxiety and will immediately be convinced of the worst case scenario.

but if there's something alarming in prospect then I need to bloody well know about it. I've got the phone follow-up with him tomorrow and will ask for full testing.

Because the diseases they need to rule out are pretty fucking serious sad

navygravy Thu 28-Apr-16 23:06:21

Spoke to GP, he's going to write to the paediatrician for advice & let me know response in a couple of weeks.

Hismommy Tue 17-May-16 20:16:52

Hi. I am going through the same thing with my 5 year old right now. Last month they tested him and his B12 level was so high off the chart they couldn't give me a number and this week when they retested it is the same thing. They have set up a follow up appt. for next Thursday. But that does not help with all the stress going on now. I would really like to know anything they tell you. And if I find out anything I will share. Hope your little one is ok smile
And I try to stay away from google also. But google is how I found this smile

babs1922 Thu 01-Sep-16 23:56:46

my 9 year old son has an upcoming appointment with a hematology oncologist at Children's hospital. His AST/SGOT is low vitamin b12, monocytes and platelets are high.

Lavendermama Wed 12-Oct-16 23:55:03

Just seeing if anybody got any diagnosis or found out why b12 was elevated. My little guy has elevated b12 but everything else normal. Already been to MD and hematology

navygravy Sat 15-Oct-16 16:17:22

so after a bit of to-ing and fro-ing we were referred to a gastro specialist at the childrens hospital. There was evidence of a long-running virus in his blood results and the high B12 would have been in response to that. She said that it should have been picked up by the GP confused

So nothing serious, in case anyone finds this thread again and wonders!

Kayriz Fri 10-Feb-17 00:45:58

Thanks for telling me that its all no big deal.. i just came back from my 3year oldz doc and she said her B12 is v high. My daughter is super smart but she doesnt eat and sleep well.. so the doc ran all types of test. Some allergy issues and Only B12 was v high so i googled. As soon as i read you saying bone marrow issue might be one problem i almost died inside!! I hope your little one is doing fine now. And hope all the other kids with this issue are good too. Plz keep me posted.

Chaotica Fri 10-Feb-17 13:14:14

My dd had this at about 4-5. She is fine too. We never knew what caused it.

Kayriz Fri 10-Feb-17 23:43:45

So basically there is notthing wrong if the b12 is v hogh? Does it go down on its own? Do you give on some food that has high b12 in it? I just found out and i am a lil concerned.

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