Discussions By Condition: Medical Errors

B12 level 68.

Posted In: Medical Errors 9 Replies
  • Posted By: pearl girl
  • March 8, 2009
  • 08:28 PM

Hello, just happened to find this terrific spot thanks to the suggestion of a kind friend. Forgive my rambling and incoherence. I've been sick for a long time - just didn't know it!

I couldn't resist telling those of you dealing with b12 issues the following: Since Sept '08 I have been to four specialists and was days away from major cervical spine surgery ( do have have spurs and stuff on 4 discs) when someone finally said, "oh yes, why don't we check your B12 level" ... after numerous mri's, brain scans, xrays.... On a scale of 211 to 989, my B12 reading was 68. (Is that some kind of world record? OMG.) I then was given ONE shot 1000 cmg and sent on my way with no follow up instructions. Needless to say I am going to the fifth doctor TODAY. wish me luck and blessings to all of you facing your personal challenges.

Later: it's been 3 weeks since diagnosis deficiency B12. Doc #5 said to go to 'X-mart" and buy any brand of B12 1000, one per day. Experienced mild improvement on cyan b12 for two weeks. Cracked lips and burning tongue with sores went away. Some feeling returning to finger tips. L'Hermitte? still very bad. Legs feel strange but not quite as wobbly. Feet especially tingly. Exhaustion continues but mental state doesn't seem quite so black. After reading much info and checking a neuro site, switched to Jarrow methyl 1000-2000 daily and after 10 days symptoms which had showed some improvement are returning.

I feel much worse. Is it possible that the b12 type switch has caused this or is it typical three steps forward two steps back type of thing. I actually had my typing ability back for a week and now I'm like a slug again. Any input would be very much appreciated. anyone ever hear of something crazy like this? Distressed and discouraged.

Oh yes, on a final strange note: neurologist said I have the brain of a 78 year old and I'm 58. (while investigating what they thought was MS) Anyone know about brain atrophy or if there is a possible connection to the b12 issue? Appreciate any and all thoughts shared.

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9 Replies:

  • Hello, just happened to find this terrific spot thanks to the suggestion of a kind friend. Forgive my rambling and incoherence. I've been sick for a long time - just didn't know it! I couldn't resist telling those of you dealing with b12 issues the following: Since Sept '08 I have been to four specialists and was days away from major cervical spine surgery ( do have have spurs and stuff on 4 discs) when someone finally said, "oh yes, why don't we check your B12 level" ... after numerous mri's, brain scans, xrays.... On a scale of 211 to 989, my B12 reading was 68. (Is that some kind of world record? OMG.) I then was given ONE shot 1000 cmg and sent on my way with no follow up instructions. Needless to say I am going to the fifth doctor TODAY. wish me luck and blessings to all of you facing your personal challenges. Later: it's been 3 weeks since diagnosis deficiency B12. Doc #5 said to go to 'X-mart" and buy any brand of B12 1000, one per day. Experienced mild improvement on cyan b12 for two weeks. Cracked lips and burning tongue with sores went away. Some feeling returning to finger tips. L'Hermitte? still very bad. Legs feel strange but not quite as wobbly. Feet especially tingly. Exhaustion continues but mental state doesn't seem quite so black. After reading much info and checking a neuro site, switched to Jarrow methyl 1000-2000 daily and after 10 days symptoms which had showed some improvement are returning. I feel much worse. Is it possible that the b12 type switch has caused this or is it typical three steps forward two steps back type of thing. I actually had my typing ability back for a week and now I'm like a slug again. Any input would be very much appreciated. anyone ever hear of something crazy like this? Distressed and discouraged. Oh yes, on a final strange note: neurologist said I have the brain of a 78 year old and I'm 58. (while investigating what they thought was MS) Anyone know about brain atrophy or if there is a possible connection to the b12 issue? Appreciate any and all thoughts shared. === I am hoping that you have found the b12 forum on wrongdiagnosis.com for the proper help. You need much higher dosage, sublingual (not oral) and the active adeno and methl forms of b12. 68 is one of the lowest I have seen, but someone on the forum I believe had a 59. Mine was 170. All terribly low values.
    Anonymous 42789 Replies
    • October 12, 2009
    • 00:23 AM
    • 0
    Flag this Response
  • You need to have b12 injections. This is ridiculous advice. This level is not a defficiency that can be corrected through your local health food store. I am assuming you have pernicious anemia, but other causes such as malabsorbtion need to be ruled out. Have you had:-Schilling test (hard to get now, but find a Dr. who does this)-Gastroscopy and biopsy (see a GI).-CBC- see if it shows megaloblastic anemia (will have high MCV and normal MCHC)-There are other tests as well, but just know-this is not a GNC issue.In any case, brain atrophy is quite serious and b12 deficiency, brain atrophy and your symptoms could indicate an underlying disease. B12 deficiency (caused by pernicious anemia or the b12 defficiency just being a symptom of)=== I am hoping that you have found the b12 forum on wrongdiagnosis.com for the proper help. You need much higher dosage, sublingual (not oral) and the active adeno and methl forms of b12. 68 is one of the lowest I have seen, but someone on the forum I believe had a 59. Mine was 170. All terribly low values.
    Anonymous 42789 Replies
    • October 14, 2009
    • 00:52 AM
    • 0
    Flag this Response
  • You need to have b12 injections. This is ridiculous advice. This level is not a defficiency that can be corrected through your local health food store. I am assuming you have pernicious anemia, but other causes such as malabsorbtion need to be ruled out. Have you had:-Schilling test (hard to get now, but find a Dr. who does this)-Gastroscopy and biopsy (see a GI).-CBC- see if it shows megaloblastic anemia (will have high MCV and normal MCHC)-There are other tests as well, but just know-this is not a GNC issue. In any case, brain atrophy is quite serious and b12 deficiency, brain atrophy and your symptoms could indicate an underlying disease. B12 deficiency (caused by pernicious anemia or the b12 defficiency just being a symptom of) ======I don't know whose advice you think is ridiculous. I do self inject with methyl once a week, but the sublinguals (both methyl and adeno) (20 mg taken daily) are what have raised my levels to around 1400 consistently and have put me on the path toward neuro healing. I did have a high MCV and the protocols suggested on the b12 forum (in conjunction with the weekly injection) have lowered my MCV by 4 points so far. The supplementation through sublinguals have increased my serium b12 and decreased my MCV. The shots are just additional insurance. Sublinguals bypass any malabsorption issues and Intrisic Factor issues. I have no idea why you are insisting on injection therapy. You have no idea what you are talking about. This person needs to be treated as soon as possible. If he/she does not have access to injection therapy, forget about it and proceed with the sublingual. Unregistred, go to the b12 forum site and get educated. The site is loaded with empirical evidence. Most of us on the forum don't know why we became b12 deficient. We are treating our symptoms in an urgent fashion with a very aggressive supplementation program to stop, and reverse neurological damage.
    Anonymous 42789 Replies
    • October 15, 2009
    • 02:42 AM
    • 0
    Flag this Response
  • ======I don't know whose advice you think is ridiculous. I do self inject with methyl once a week, but the sublinguals (both methyl and adeno) (20 mg taken daily) are what have raised my levels to around 1400 consistently and have put me on the path toward neuro healing. I did have a high MCV and the protocols suggested on the b12 forum (in conjunction with the weekly injection) have lowered my MCV by 4 points so far. The supplementation through sublinguals have increased my serium b12 and decreased my MCV. The shots are just additional insurance. Does anyone else feel overstimulated on cyanocobalamin form of b12? I was self injecting the cyano form 2 times weekly, but had to switch to the hydroxycobalamin form, because it wasnt supposed to be as stimulating. When i was taking the cyano form and had major problems with insomnia. Is this a common thing with anyone else.I wrote about my b12 shot experience here
    Anonymous 42789 Replies
    • December 12, 2009
    • 10:48 PM
    • 0
    Flag this Response
  • You need to have b12 injections. This is ridiculous advice. This level is not a defficiency that can be corrected through your local health food store. I am assuming you have pernicious anemia, but other causes such as malabsorbtion need to be ruled out. Have you had:-Schilling test (hard to get now, but find a Dr. who does this)-Gastroscopy and biopsy (see a GI).-CBC- see if it shows megaloblastic anemia (will have high MCV and normal MCHC)-There are other tests as well, but just know-this is not a GNC issue.In any case, brain atrophy is quite serious and b12 deficiency, brain atrophy and your symptoms could indicate an underlying disease. B12 deficiency (caused by pernicious anemia or the b12 defficiency just being a symptom of)My B12 level was zero. The Drs have never seen someone with a level of zero. I am in rehab now.
    Anonymous 42789 Replies
    • December 14, 2009
    • 03:34 PM
    • 0
    Flag this Response
  • Does anyone else feel overstimulated on cyanocobalamin form of b12? I was self injecting the cyano form 2 times weekly, but had to switch to the hydroxycobalamin form, because it wasnt supposed to be as stimulating. When i was taking the cyano form and had major problems with insomnia. Is this a common thing with anyone else. I wrote about my b12 shot experience here hi Jeffrey, I highly recommend getting the shots in the methyl (active) form. I had just the opposite reaction to cyano. I would literally fall asleep after each shot. I did try hydrox. and it did work a bit better, but the neuro healing did not really start untill I got onto an sublingual and injection protocol w/ methyl. If you have more questions regarding the protocol vist us at this threadhttp://forums.wrongdiagnosis.com/showthread.php?p=209606#post209606 it is a really long thread. Also visit us at this one as well. http://forums.aboutmecfs.org/showthread.php?t=188&page=80
    Anonymous 42789 Replies
    • December 15, 2009
    • 05:37 AM
    • 0
    Flag this Response
  • My B12 level was zero. The Drs have never seen someone with a level of zero. I am in rehab now.My level was 0.36 three weeks before my first injection of B12 this past November. My doctors haven't ever seen someone with numbers that low either. I am nowhere near having my levels under control just yet, and I'm not entirely certain how much longer I can cope.How long did it take for yours to be managed effectively? What was your case like?
    Anonymous 42789 Replies Flag this Response
  • My level was 0.36 three weeks before my first injection of B12 this past November. My doctors haven't ever seen someone with numbers that low either. I am nowhere near having my levels under control just yet, and I'm not entirely certain how much longer I can cope. How long did it take for yours to be managed effectively? What was your case like? See my post above. Please join us at this forum thread and register. we woul like to help you out. Go to the end of this tread and tell your story and we will point you to a protocol that has worked for me. http://forums.wrongdiagnosis.com/sho...606#post209606
    Anonymous 42789 Replies Flag this Response
  • === I am hoping that you have found the b12 forum on wrongdiagnosis.com for the proper help. You need much higher dosage, sublingual (not oral) and the active adeno and methl forms of b12. 68 is one of the lowest I have seen, but someone on the forum I believe had a 59. Mine was 170. All terribly low values.My level was just over 70 and as my neurologist said excptionally low and without urgent treatment I would soon have been in a wheel chair. I now have a gp who is reluctant to give injections any frequently than 3 monthly. Thinks I could 'over dose' .. ummm water soluable overdose virtually impossible. Tests 6 weeks after injection show levels arond 300. I now have permanent breathing difficulties, peripheral neuropathy and sub acute degeneration of the spinal nerve. If I wait for the 3 months the painin my feet and legs become unbearble ... and yes mood takes a lot of tolerance. It is all a big continual fight to have disiese proerly understood.Robin
    Anonymous 42789 Replies Flag this Response
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