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23andme results! Methyl vs. hydroxy B12???

Messages
15,786
Thanks for your help, Valentijn :).
I actually did just have one other thought, though it's a bit of a long shot.

There's a website where you can upload your 23andMe data file (good idea to rename it to remove your real name from it), and some time later someone sends you an email listing all of your rare alleles. Maybe there'd be something in there explaining your odd reaction to B12?

The site is opensnp.org
 

NilaJones

Senior Member
Messages
647
I actually did just have one other thought, though it's a bit of a long shot.

There's a website where you can upload your 23andMe data file (good idea to rename it to remove your real name from it), and some time later someone sends you an email listing all of your rare alleles. Maybe there'd be something in there explaining your odd reaction to B12?

The site is opensnp.org

Thanks!

I was trying to use the rare allele site where you copypaste one gene at at time (Ian, I think, is the guy) but my computer couldn't handle the copypasta. Upload and email sounds good :).
 

NilaJones

Senior Member
Messages
647
I actually did just have one other thought, though it's a bit of a long shot.

There's a website where you can upload your 23andMe data file (good idea to rename it to remove your real name from it), and some time later someone sends you an email listing all of your rare alleles. Maybe there'd be something in there explaining your odd reaction to B12?

The site is opensnp.org
Hmm... I don't see anything like that on opensnps. Do you have a direct link? Or could it be another site?
 

NilaJones

Senior Member
Messages
647
Heh. Turns out test results arriveded yesterday, but I was too confused to open the mail.

Abnormal:
N-methylhistamine, urine 230
prostaglandins, urine 410 (while on 200mg celebrex daily +some GLA, maybe much higher without)

IBC unsaturated 372
total IBC 400
iron sat 7
ferritin 5
iron 28

Normal:
homocysteine s 6.5 (while taking 1100mg methylfolate daily)
creatine, urine 32
 
Messages
15,786
Abnormal:
N-methylhistamine, urine 230
prostaglandins, urine 410 (while on 200mg celebrex daily +some GLA, maybe much higher without)
IBC unsaturated 372
total IBC 400
iron sat 7
ferritin 5
iron 28
Am I right in thinking the IBCs are high, and iron saturation, ferritin, and iron are low?

N-methylhistamine is very interesting too - was that tested for a specific reason?
 

NilaJones

Senior Member
Messages
647
Am I right in thinking the IBCs are high, and iron saturation, ferritin, and iron are low?

Yeah. Apparently that's what happens in iron deficiency anemia -- no iron makes you more eager to bind to it when some shows up ;).

New research shows that, contrary to myth, IDA in women is not due to heavy periods -- it's intestinal bleeding, same as men.

N-methylhistamine is very interesting too - was that tested for a specific reason?

Systemic mast-cell activation. Something I will need to read up on, now. I know nothing about it.
 
Messages
15,786
Yeah. Apparently that's what happens in iron deficiency anemia -- no iron makes you more eager to bind to it when some shows up ;).
So you have iron deficiency anemia, which can result in reduced red blood cell production (even if it's caused by losing blood in the first place).

B12 might trigger an attempt to increase blood volume and RBC production ... which might not work well when you don't have enough iron for the existing RBCs.

So that might be your answer - the iron deficiency may need to be resolved before you can tolerate higher doses of B12.
 

NilaJones

Senior Member
Messages
647
So you have iron deficiency anemia, which can result in reduced red blood cell production (even if it's caused by losing blood in the first place).

B12 might trigger an attempt to increase blood volume and RBC production ... which might not work well when you don't have enough iron for the existing RBCs.

So that might be your answer - the iron deficiency may need to be resolved before you can tolerate higher doses of B12.

You think that would cause the intense neurological effects? Or the shaking?

I have been tested for IDA maybe 10 times in the past 30 years. Sometimes I have it, sometimes I don't, depending on how much iron I have been taking. I took a lot in the few weeks between when the blood draw was done and when I trialed the B!2. I think it's unlikely that I was IDA+ on the day I took the B!2.

Without much access to testing it is of course impossible to be sure. But I have pretty good track record, over the years, of predicting what the test results will be on a given day. (I have bad effects if I take too much iron, too -- if you are wondering why I don't just take it all the time.)

In a perfect world, I would test my iron every day and not wait 3 weeks for test results, sure. I find this whole business of trying to do methylation with spotty and slow testing to be very frustrating. But I am trying to work with what's available.

If I was low on the day I took B12, what connection are you seeing between RBC and the symptoms I was having? I'm not seeing it. Maybe there is more to iron than I realise!
 
Messages
15,786
If I was low on the day I took B12, what connection are you seeing between RBC and the symptoms I was having? I'm not seeing it. Maybe there is more to iron than I realise!
The low iron can cause lower amounts of RBC (and blood volume?). When your RBC drops, there's less for even normal amounts of iron to bind to - and if you increase RBC and/or blood volume without a corresponding increase in iron (needed to bind oxygen), your body really might not like that.

And once RBC or blood volume is lost, it takes some time to build them back up, combined with taking iron to make sure they're nice and happy RBCs. Since you don't consistently need iron and sometimes stop taking it, there's probably times when levels of it keep going down, maybe while your RBCs are trying to go up, etc.

Basically there's a cycle where RBCs drop, which causes iron to drop, which causes RBC production to stay low. And B12 might be trying to force more RBC production, even if you don't have enough iron to keep the extra RBCs happy. So iron and B12 are both capable of interacting with your RBCs quite a bit, and a dysfunction in iron might make it difficult for your RBCs to interact with B12 properly.

Or there might be something else entirely going on :D

I think finding the cause of your iron deficiency would be a great place to start, though I have no idea how that's done. If you've got intestinal bleeding or something, then it would certainly be good to have that treated!

Another possibility is that you'll need iron supplementation when starting up B12 supplementation, so that the iron is available for any increase in RBCs cause by the B12.
 

NilaJones

Senior Member
Messages
647
Thank you :).

I will start taking iron more regularly, and will add it to my list of things to remember next time I try B12!

As for finding the cause, my doc did a lot of testing, but the next step would be an endoscopy and that requires more energy than I have right now. It's the same old story -- too sick to access medical care :(.
 

NilaJones

Senior Member
Messages
647
More data I just thought of:

I took a lot of iron in the week after my last trial of B!2, because I had the worst restless legs of my life, and that is, for me, normally a sign of either too little or too much iron. This was also right after the blood draw. I hadn't got the test results, but I knew my iron was on the low side and not the high side, so I upped it.

Anyway, the iron helped a little but not much, Magnesium and zinc helped more. So this is not much info, but is some indication that B12 did not deplete what iron I had. Of course, it might only work at higher concentrations...
 
Messages
15,786
Anyway, the iron helped a little but not much, Magnesium and zinc helped more. So this is not much info, but is some indication that B12 did not deplete what iron I had. Of course, it might only work at higher concentrations...
Yeah, I wouldn't expect B12 to actually deplete iron ... I don't think they interact with each other directly. But I think the problem might be the impact that B12 has on RBCs, and that those RBCs rely on having iron available.
 

NilaJones

Senior Member
Messages
647
Yeah, I wouldn't expect B12 to actually deplete iron ... I don't think they interact with each other directly. But I think the problem might be the impact that B12 has on RBCs, and that those RBCs rely on having iron available.

Oh, I see, I didn't qqite get that before :).