zerohours000 Posted July 7, 2018 Report Share Posted July 7, 2018 My doctor said I have elevated B12. And of course the possibilities of that suck too. Anyone else have this? Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted July 7, 2018 Report Share Posted July 7, 2018 Ok, well, that isn't great, but it might be something easily treatable and caught early. At least they are going to run more tests and are taking you seriously. Keep us posted. Quote Link to comment Share on other sites More sharing options...
zerohours000 Posted July 7, 2018 Author Report Share Posted July 7, 2018 23 minutes ago, KiminOrlando said: Ok, well, that isn't great, but it might be something easily treatable and caught early. At least they are going to run more tests and are taking you seriously. Keep us posted. I will. I just have an awful feeling about it all. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted July 7, 2018 Report Share Posted July 7, 2018 Mine is high from supplementing... the test doesn't differentiate between a cyanocobalamin tablet you took and your real B12 levels. Of course it could be a lot of things, but if you take B12 or lots of enriched food, it could just be that. The ranges are a little wonky too... are you over 2000? Quote Link to comment Share on other sites More sharing options...
p8d Posted July 7, 2018 Report Share Posted July 7, 2018 Mine has been elevated for a couple of years even after I stopped supplementing. My current and former PCP are not concerned. I guess because other tests that might indicate a problem fine. Quote Link to comment Share on other sites More sharing options...
zerohours000 Posted July 7, 2018 Author Report Share Posted July 7, 2018 10 hours ago, RecipeForDisaster said: Mine is high from supplementing... the test doesn't differentiate between a cyanocobalamin tablet you took and your real B12 levels. Of course it could be a lot of things, but if you take B12 or lots of enriched food, it could just be that. The ranges are a little wonky too... are you over 2000? I don’t supplement. Which is why it’s concerning. I’ve heard it could be high because of malabsorption as well. I’ll just have to follow through with my doctor. Rule out other things hopefully. 🤷♀️ Quote Link to comment Share on other sites More sharing options...
Scout Posted July 8, 2018 Report Share Posted July 8, 2018 I hope things work out soon for you, @zerohours000. Of course, I'm not a Doctor, but I'd ask them about perhaps lowering meat intake in the meantime? Meat is high in B12, so if you eat a lot of it, it might be adding more to a system that has plenty. Again - I'm not sure why your b12 is high, but that's just a suggestion to look into. I know someone who had to cut back on meat after they found out their iron levels were too high. All the best. Quote Link to comment Share on other sites More sharing options...
zerohours000 Posted July 9, 2018 Author Report Share Posted July 9, 2018 On 7/8/2018 at 3:16 AM, Scout said: I hope things work out soon for you, @zerohours000. Of course, I'm not a Doctor, but I'd ask them about perhaps lowering meat intake in the meantime? Meat is high in B12, so if you eat a lot of it, it might be adding more to a system that has plenty. Again - I'm not sure why your b12 is high, but that's just a suggestion to look into. I know someone who had to cut back on meat after they found out their iron levels were too high. All the best. Just an update: my value was 926. Normal range is <900. So it’s only slightly high, but needs to run a “CBC with differential” and go from there. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted July 9, 2018 Report Share Posted July 9, 2018 I'm sorry for the worrisome test result but there are quite a few explanations for this from what I have read. Glad your doctor is taking this seriously and following up with more testing. Take care. Quote Link to comment Share on other sites More sharing options...
ks42 Posted July 9, 2018 Report Share Posted July 9, 2018 One easy thing to check would be to find out whether you have the genetic MTHFR mutation. My sister and I both have it (I only have one copy, so it doesn't affect me, but my sister has two, so it does affect her). Anyway, it makes you unable to properly utilize normal forms of B12, so B12 just builds up in your system, causing high B12 levels but B12 deficiency at the same time (and to my knowledge sometimes high folate levels). It's treated by taking special vitamin B12 and folate supplements that your body can actually use (they have to be methylated). My sister had extremely high B12 levels because of this, yet she was technically deficient in B12 because her body wasn't utilizing it, it was just building up and sitting in her bloodstream. So she had symptoms of a severe vitamin B deficiency along with the high levels. Any doctor can order the MTHFR test (mine did, and insurance covered no problem), but you can also do it through 23andme, and then run your raw data through something like Genetic Genie - but that's expensive, so I would recommend going through your doc if you can. There can also be all sorts of other symptoms that come along with having the MTHFR mutation as well that can make you systemically sick, as well. I know there are a ton of other possibilities as well for high vitamin B12 levels, but just wanted to throw that out there. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted July 9, 2018 Report Share Posted July 9, 2018 I'm sure I have MTHFR too. My levels are about 2000 and my hematologist is not concerned about it even though I haven't been tested for that mutation (he says it's so common it's not worth looking for-I don't know, but he didn't want to bother testing). I had exactly that scenario and take the methyl version of B12 and folate, Quote Link to comment Share on other sites More sharing options...
zerohours000 Posted July 9, 2018 Author Report Share Posted July 9, 2018 On 7/7/2018 at 6:19 AM, RecipeForDisaster said: Mine is high from supplementing... the test doesn't differentiate between a cyanocobalamin tablet you took and your real B12 levels. Of course it could be a lot of things, but if you take B12 or lots of enriched food, it could just be that. The ranges are a little wonky too... are you over 2000? 926. No supplements. Quote Link to comment Share on other sites More sharing options...
zerohours000 Posted July 10, 2018 Author Report Share Posted July 10, 2018 On 7/9/2018 at 2:12 PM, RecipeForDisaster said: I'm sure I have MTHFR too. My levels are about 2000 and my hematologist is not concerned about it even though I haven't been tested for that mutation (he says it's so common it's not worth looking for-I don't know, but he didn't want to bother testing). I had exactly that scenario and take the methyl version of B12 and folate, I have the methyl but not the folate. Though I’ve never taken them because I bought them the day before I found out about the high b12 and would like to know if there’s a reason it’s staying in my blood. Quote Link to comment Share on other sites More sharing options...
Help4Me Posted September 5, 2018 Report Share Posted September 5, 2018 MY B12 was very high too and my doctor told me to stop taking it.....I wonder if I have the MTHFR thing.....I will ask them to check it but I doubt they will ....they just keep referring me out to other doctors...ugggg........my level was like 1000 ......I thought maybe it was because I had just taken my vitamin an hour before the test....I will check into this though..... Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted September 5, 2018 Report Share Posted September 5, 2018 From what I have read, if you are taking B12 supplement, your blood levels may run high but that does not necessarily mean there is a problem. Unfortunately not all doctors are very well versed in vitamin deficiencies and supplementation. If you were told before to take B12 due to a deficiency I would seek a second opinion about stopping it entirely. B12 deficiency can be very serious. I say this from my experience this year of being diagnosed with low B12 and developing anemia and a full blown POTS relapse for 2 months, which I think was related. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted September 5, 2018 Report Share Posted September 5, 2018 Pernicious Anemia is brutal. B12 deficiency can turn in to that. As someone who dealt with it, I would be careful. Either get a second opinion or if you stop the B12, hopefully they will retest in a month or two so you can see if/how your body uses it. Maybe that is the strategy, stop the med and see what happens, then determine what is needed from there. Good luck. Quote Link to comment Share on other sites More sharing options...
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