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cindy B12 deficiency (pernicious anemia) survivor

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Old 01-06-2009, 09:09 PM   #11
cindyd
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Hey, let me know why you had your B12 checked. Whats going on with you? Cindy B12
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Old 01-06-2009, 09:27 PM   #12
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thanks to FranksAngel, Darlene, azoyizes, Jaspar and tamiloo. Yes tamiloo I would like to be your friend, as soon as I figure out how. I'm still learning this computer!!!!
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Old 01-07-2009, 05:36 AM   #13
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--I'd like to point out two things.

Acid blockers often contribute to B12 deficiency in those who are prone to it, especially as we get older. We need intrinsic factor to break the large B12 molecule out of food, and this works only in an acidic stomach environment. We tend to secrete less of it as we get older, and using meds that block acid can actually hasten/worsten a developing inability to break B12 out of food.

Second, many doctors still don't know they should not only be testing people for B12 deficiency, but if such is revealed (and the MMA and homocyseine tests are probably better indicators of this than a "borderline" Serum B12 level), megadose oral supplemenation (on the order of 1-5mg/day) is generally just as effective as injections--and cheaper. There is enough passive absorption of the megadose to begin to build B12 levels back up. Methylcobalamin forms are preferred if can get them, as the B12 is already in absorbable form. (Commercially prepared cyanocobalamin will work for many people, but why tax the system getting rid of the cyanide radical?)

Part of the problem is that "normal" ranges for serum B12 are set much too low in the US--usually at the 200 level. In Japan and many parts of Europe, the low normal boundary is set at 500.

Many of use here take B12 even with higher initial levels than that as a form of neuroprotection--there is no known toxicity level, and people have taken up to 36mg/day in Japanese studies without ill effect (the body tends to use what it needs and discard the rest). Most of us on the peripheral neuropathy board, for example, feel better with our serum B12 values in 4 digits.

Several people who frequent these boards are among the world's leading lay experts on this subject--one should search out posts by Rose, MrsD, JCCglutenfree, and Paul Golding for more info.
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Old 01-07-2009, 04:42 PM   #14
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Thanks Glenn, for the referrals. I also agree about acid reducers. Anyone on them should get B12 level checked. Drs. hand them out like candy and forget about it. Cindyd
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Old 01-10-2009, 12:54 AM   #15
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Hi Cindy,
I think you will find this site very helpful. I found many caring folks here... true friends. Thank you for your story. I'm not sure why my B12 suddenly became low. I had my blood tested again this week. It's still low. I'm taking B12 supplements. I go back to my neuro the 29th. May he can shed some light on it. My white count was down. It is now up a little but still a little low, but now my red count is down. Also my potassium is low. Don't know for sure what is going on. I take Betaseron injections every other day for my ms. I hope that is not what is causing it. I hate to think about having to stop those. I have been in such hope it would be the miracle worker to slow down the ms.

So do you know what caused the B12 deficiency with you? I didn't read all the other posts so I apologize if you've already explained. I'm so exhausted these days that I can't stay online for more than a few minutes at a time.

Take care and wishing you the best!
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Old 01-10-2009, 04:27 PM   #16
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Hello and welcome to Neuro Talk, feel free to explore and do not hesitate to ask questions concerns and or worries you may have. Folks here are fantastic helpful and kind, again welcome to NT
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Old 03-10-2009, 10:03 AM   #17
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Hey girl, just read your story. I'm impressed -- especially with how well and quickly you have learned to maneuver though this site. It's making me crazy, well. you know... crazier. Stay in touch.
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Old 04-08-2009, 06:17 PM   #18
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Hello Friend2U, I love your id, and sure could use a friend. Just received official diagnosis of pernicious anemia. Gee, it only took 8 months... as I deteriorated. Anyway, if it's ok with you, I'd love to call you friend.
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Old 04-12-2009, 08:07 AM   #19
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I'm glad you're out of the medical wonderland. It's a jungle out there. You sure went through a lot of expensive and time consuming tests to get to the bottom of it. I guess you didn't have any choice in that since you're not a doctor. It's good to know that all those other areas are in good condition. That's a peace of mind to know.

I too have used sublingual B12 (GNC store-tastes better-use after you brush your teeth, and other times too) for probably 20 years. Need some right now. It does help boost the body so you go do a little more.

I hope you continue to improve.
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Old 04-25-2009, 06:12 PM   #20
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Started MethylB12 5000 sublinguals a few days ago. Also doing megafolonic, B-right, and am ready to add AdenosylB12 in a week. So far no effects. Thats good for me, as was kind of anxious about the change. Put hubby, (345) daughters (505) and (311) and sister (465) on it also. So far no start up symptoms to report. My 15 yr old daughter was just diagnosed with hypothyroidism this week also. I had had her to her pediatrician for a B12 check. He did a few tests and said no reason to test her. I immediatly made her an appointment with my own doc. Being 15 she needed a step up anyway. My docs a female. She did a few more tests and concluded 0.01 TSH level. Hypothy . Sure glad I did the doc switch. She has not had a good year in school, from a child I didnt have to worry about in that respect and has needed much more sleep than usual. Being a dancer 5 days a week for 2 to 3 hours at a time plus school, I dont know how she has been doing it. Now I know why the grades dropped. Waiting for specialist app for her. Will keep updating.
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