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Old 01-30-2012, 09:34 AM #1
Westgrl Westgrl is offline
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Confused B12 numbers dropped

So frustrated. I was diagnosed in May with B12 deficiency and started injections. In Nov. my numbers were up to 505 (from 163). He said he wanted to see them higher but wanted me to try supplements. So I stopped injections and I bought 5000 methyl B12 and have been taking them daily since (over 2 months). Last week I had my blood work done and my numbers dropped to 406. I take the supplement on an empty stomach. I didn’t get to speak with the Dr., he had a young girl call me to tell me everything was good & to keep taking supplements. I had to ask her for the exact numbers. How does he think dropping 100 points is good??

I’m thinking maybe I need to go see a Hematologist to figure out what’s going on.

Stephanie
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Old 01-30-2012, 09:42 AM #2
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Testing is not a perfect science. Things happen in testing...calibrations can get off, etc. So tests are only snapshots in time, and with a repeat, say in 3 months, you should know more. I'd ask for an MMA test also at that time. If your MMA is low that indicates B12 is working for you.
As far as labs go... Quest admitted to using wrong calibrations for a YEAR in testing Vit D levels. All their tests for everyone were in error for a whole YEAR. So one cannot rely on tests 100% for anything IMO.

B12 is stored in the liver. So some of it may be going there to make up lost stores. It is also transferred into the CSF...cerebralspinal fluid to go around the spinal cord and into the brain. Blood work is for serum, only and does not reflect what is happening in the tissues of the body. Only what is floating around at that time "loose".

You are not back to where you were...and that is the good part.

As your body, gobbles up the B12, there are bound to be temp changes in blood level. If this concerns you alot...take an extra one 3 times a week, at 2 a day... and see if that changes things.
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Old 01-30-2012, 10:56 AM #3
Westgrl Westgrl is offline
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Originally Posted by mrsD View Post
Testing is not a perfect science. Things happen in testing...calibrations can get off, etc. So tests are only snapshots in time, and with a repeat, say in 3 months, you should know more. I'd ask for an MMA test also at that time. If your MMA is low that indicates B12 is working for you.
As far as labs go... Quest admitted to using wrong calibrations for a YEAR in testing Vit D levels. All their tests for everyone were in error for a whole YEAR. So one cannot rely on tests 100% for anything IMO.

B12 is stored in the liver. So some of it may be going there to make up lost stores. It is also transferred into the CSF...cerebralspinal fluid to go around the spinal cord and into the brain. Blood work is for serum, only and does not reflect what is happening in the tissues of the body. Only what is floating around at that time "loose".

You are not back to where you were...and that is the good part.

As your body, gobbles up the B12, there are bound to be temp changes in blood level. If this concerns you alot...take an extra one 3 times a week, at 2 a day... and see if that changes things.

Thanks for the words of encouragement Mrs D. It worries me because when I was getting the injections, my numbers consistently went up. When I stopped & went to supplements, they went down. It took me months to get them up to 500 so I worry that I could continue to slide backward & then have to spend months getting it back up again. I wouldn’t be so concerned except that I continue to suffer from Neurological symptoms, fatigue, etc.
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Old 01-30-2012, 11:32 AM #4
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Were you getting methylcobalamin injections? Or was it Cyano...?

If you were not converting cyano it could have been building up and not being used. Non conversion is not that common but it happens.

The methyl is rapidly used by tissues however.
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Old 01-30-2012, 11:46 AM #5
Westgrl Westgrl is offline
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I think the staff at my Dr office messed up. It happened once before, they gave me the results to old blood work instead of the newest. I just called back and asked if they could fax me a copy, I got a different girl. I knew she was pulling it again because she asked when & where again. The fax I got is different, drastically. I kept looking all over thinking I was missing something.

All of my numbers on everything are different on this report, and according to this, my B12 level is 1797!! I see the Dr in a few weeks so I am going to make sure he knows they called me with the wrong numbers again. I’m still in shock at this number! I even stopped taking the supplement 5 days before I got the blood test.
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Old 01-30-2012, 12:12 PM #6
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Oh, see... it is so easy these days to get messed up in communication! (one of my friends got a major run around recently at her doctors too over test results)...
Tests can be wrong as well, so we all should just keep on testing at intervals etc.

That sounds more like it... my results for 5mg oral for 3 months was 1999 (the highest that hospital reports at--where their machines stop). I was testing Puritan's Pride new methylB12 to see if it was good.

So just keep on for another 3 months at 5mg a day...once you start to feel no changes, you can cut back to 3 times a week or switch to 1mg daily. That is up to you. It can take quite a bit of time to heal up so being high is not dangerous...just novel.

Some the the PNers keep they numbers over 1000 and a few have really high ones out of range like mine.
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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