Discussions By Condition: I cannot get a diagnosis.

B12 Deficiency - what's protocol? HELP!

Posted In: I cannot get a diagnosis. 26 Replies
  • Posted By: rhondamba
  • June 4, 2007
  • 09:54 PM

I was diagnosed with a B12 deficiency at age 38. At the time of diagnosis, my B12 levels were in the 100s. My Internist gave me ONE shot and then put me on daily dose of B12 tablet. I had a hard time remembering to take the pills and thus my B12 levels remained below normal. We moved to 1 shot/month. Still, as of 8 weeks ago my B12 is around 300. Finally, after complaining of persistent exhaustion (14 months after initial diagnosis) my Internist prescribed 1 injection per week for 4 weeks, then wait 2 weeks and return to the lab for a blood test. My level as of a week ago is now at 451.

Given my result, she has prescribed 1 injection per month on an ongoing basis. I have asked her to please increase my prescription to 2x/month because I'm already feeling fatigued and had a noticeable boost in energy when I was taking 1 injection per week.

What are normal B12 reference ranges? If 4 injections has upped my B12 from 300 to 451, is that good? Will I be able to maintain good B12 levels on monthly injections?

TIA
Rhondamba

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26 Replies:

  • I was diagnosed with a B12 deficiency at age 38. At the time of diagnosis, my B12 levels were in the 100s. My Internist gave me ONE shot and then put me on daily dose of B12 tablet. I had a hard time remembering to take the pills and thus my B12 levels remained below normal. We moved to 1 shot/month. Still, as of 8 weeks ago my B12 is around 300. Finally, after complaining of persistent exhaustion (14 months after initial diagnosis) my Internist prescribed 1 injection per week for 4 weeks, then wait 2 weeks and return to the lab for a blood test. My level as of a week ago is now at 451. Given my result, she has prescribed 1 injection per month on an ongoing basis. I have asked her to please increase my prescription to 2x/month because I'm already feeling fatigued and had a noticeable boost in energy when I was taking 1 injection per week. What are normal B12 reference ranges? If 4 injections has upped my B12 from 300 to 451, is that good? Will I be able to maintain good B12 levels on monthly injections? TIARhondambaDoes anybody answer these questions?
    Anonymous 42789 Replies Flag this Response
  • Hi, just logged in and found your question. I work in a medical office and we give a lot of patients their monthly B12 injections for anemias. Your doctor did the course as usual procedure, trying the pills first and when that didn't up your level fast enough went to the 4 injections a month. Now that your level is up the once a month should hold you. I have found though that everyone that takes those shots can just about tell you to the day when their shot is due. They will call and say "would you look and see if its not time for my shot, I feel like it is".....sure enough I look and it is. The way a doctor explained it to me was that on that type...(I took hormone/b12 like you weekly then monthly)...you get a high dose right after the shot, then it begins to weaken down in your system letting you know its time for the next one. On our patients we will check their hemogram about every 3 or 4 months for a while then every 6 months to be sure its staying up for them. Later if it is then you can go to once a year as long as you are doing ok. But we always see chronic illness or problems on a 6 month basis. Good luck and health to you.
    Anonymous 42789 Replies Flag this Response
  • Rhonda, NO, NO, NO! The other posters are not quite correct! If your level was 100 You need injections! And it sounds like you did not get enough!!!!!!!!!! UGH! I see so many posters posting to B12 problems with the wrong info! Please see Sally Pollchak's R.N. thread on B12....I'll post the link next. You've got to follow her info, or else it is akin to you repairing plumbing water leaks with duct tape! Best of luck. Let me know.
    Anonymous 42789 Replies Flag this Response
  • Here's the link. http://forums.wrongdiagnosis.com/search.php?searchid=58577 I am orderingher book.
    Anonymous 42789 Replies Flag this Response
  • I cannot follow the link posted for Sally Pollchak R.N. Just let me add my lay person's 2 cents: 1) Get your urine MMA tested (uMMA). Blood levels can vary widely, whereas testing this protein in your urine will tell you about the effects of the B12 deficiency, and not the blood levels. See this link which quotes medical studies: http://www.veganhealth.org/b12/levels 2) There are sublingual pills for B12 that are tiny: you just place one under your tongue and go about your life while it dissolves in seconds (ok, maybe a minute). This is supposed to provide the best natural absorption, better than swallowing a pill (note that an injection does not qualify as "natural"). Good luck!
    Anonymous 42789 Replies Flag this Response
  • A good sublingual methylb12 of 1000mcg or more per day will normally give excellent results, better than anything except methylb12 injections daily. A b-complex should be taken twice a day, and a&d (from fish oil), omega3 oil for neural healing, zinc, magnesium, vitamin e, vitamin c - all of which are needed for methylb12 to act fully and provide the healing possible. Also a total of 1200 mcg or more a day of folic acid should be included. After 6 months if certain of the symtoms are still present, then a shift to methylfolate from folic acid should take care of that. As your levels are so low, a modest potassium supplement could help if muscles spasms start up. MMA elevation specifically indicates an adenosylcobalamin deficiency. Elevated homocysteine indicates methylb12. Adenosylb12 is sometimes called dibencozide and powers the mitochondria.
    Freddd 3576 Replies Flag this Response
  • I was told my leg pain was due to low B12 levels. I was in the low 300 range, I asked what the normal range was. I was suprised to find out the range is very wide 200-1000. Sounds like you were on the low end. I was told to start out at 1 shot every two weeks for 1 month then 1 shot a month after that, however my doctor was well aware I was taking my shots every week due to pain and he was OK with that. With that said, my levels were still only around 700-800. Hope this helps.
    Anonymous 42789 Replies Flag this Response
  • Try getting the lacto-bacillis strains (yogurt bacteria) into your gut as these help to make your own B vitamins in the gut as nature intended. Also get your folate/folic acid supplement or leafy green vegetables, etc. as deficiency in this can also masquerade as a B12 deficiency
    Anonymous 42789 Replies Flag this Response
  • Does anybody answer these questions?I have PA genetically passed on from Swedish Grandmother diagnosed by an internist testing my IF. Doc gave me 8 weeks of 1cc to continue monthly at 1cc. My readings kept staying low, around 400, and he felt that I needed a visit to mental health. I made a bargain; Price is Right for my health; If he could get my B12 up to 1100, top end of normal range, I would go and see mental health. At mental health I was found to be fine just a little PTSD resulting from this physician. I now give myself 2cc per month. If I ever get sick with the flu etc I up it for 1 month. Here's the thing; you are slightly immunocomprimised with this disease and monitoring is crucial. Make sure there is nothing else going wrong to keep your B12 so low. Good luck!
    barefootcontessainor 1 Replies
    • December 6, 2008
    • 08:04 PM
    • 0
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  • Do you have simply B12 deficiency or pernicious anemia?Have you had a Schilling test?If not,it's indicated.
    richard wayne2b 1232 Replies
    • December 30, 2008
    • 05:52 PM
    • 0
    Flag this Response
  • I was told my leg pain was due to low B12 levels. I was in the low 300 range, I asked what the normal range was. I was suprised to find out the range is very wide 200-1000. Sounds like you were on the low end. I was told to start out at 1 shot every two weeks for 1 month then 1 shot a month after that, however my doctor was well aware I was taking my shots every week due to pain and he was OK with that. With that said, my levels were still only around 700-800. Hope this helps. http://forums.wrongdiagnosis.com/showthread.php?t=9948&page=144 If you were to take sublingual tablets of the right brands daily of methylb12 and adenosylb12 plus cofactors you would have no more problem. Cyanob12 is so near to worthless everybody that iuses it struggles. Cyanob12 is inactive and must convert to one of the two active forms which it does at 6 parts per million which is rarely enough to heal. The two actiove forms are approaximately 100 to 10,000 times more active. You are spinnming your wheels trying to use cyanob12 to correct test resutls. If you want real results come on over the the b12 forum and forget the cyanob12 nonsense.
    Freddd 3576 Replies
    • December 30, 2008
    • 06:01 PM
    • 0
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  • I have PA genetically passed on from Swedish Grandmother diagnosed by an internist testing my IF. Doc gave me 8 weeks of 1cc to continue monthly at 1cc. My readings kept staying low, around 400, and he felt that I needed a visit to mental health. I made a bargain; Price is Right for my health; If he could get my B12 up to 1100, top end of normal range, I would go and see mental health. At mental health I was found to be fine just a little PTSD resulting from this physician. I now give myself 2cc per month. If I ever get sick with the flu etc I up it for 1 month. Here's the thing; you are slightly immunocomprimised with this disease and monitoring is crucial. Make sure there is nothing else going wrong to keep your B12 so low. Good luck! You should try ther real active b12s instead of the excretion form of cyanob12, what real b12 convertsa to after it detoxifies cyanide.http://forums.wrongdiagnosis.com/showthread.php?t=9948&page=144
    Freddd 3576 Replies
    • December 30, 2008
    • 06:02 PM
    • 0
    Flag this Response
  • I cannot follow the link posted for Sally Pollchak R.N. Just let me add my lay person's 2 cents: 1) Get your urine MMA tested (uMMA). Blood levels can vary widely, whereas testing this protein in your urine will tell you about the effects of the B12 deficiency, and not the blood levels. See this link which quotes medical studies: http://www.veganhealth.org/b12/levels 2) There are sublingual pills for B12 that are tiny: you just place one under your tongue and go about your life while it dissolves in seconds (ok, maybe a minute). This is supposed to provide the best natural absorption, better than swallowing a pill (note that an injection does not qualify as "natural"). Good luck! To get effective levels a selected sublingual will give 15% abvsorbtion if allowed to linger for 45 minjutes or more.
    Freddd 3576 Replies
    • December 30, 2008
    • 06:03 PM
    • 0
    Flag this Response
  • Try getting the lacto-bacillis strains (yogurt bacteria) into your gut as these help to make your own B vitamins in the gut as nature intended. Also get your folate/folic acid supplement or leafy green vegetables, etc. as deficiency in this can also masquerade as a B12 deficiency Lactobacillus does absolutely NOTHING to reverse a b12 deficiency. There is a tiny amount of b12 in milk, and some in eggs, more in meat and the most in liver. http://forums.wrongdiagnosis.com/showthread.php?t=9948&page=144 The three 5 star brands of natural bn12s can work wonders.
    Freddd 3576 Replies
    • December 30, 2008
    • 06:05 PM
    • 0
    Flag this Response
  • I was diagnosed with a B12 deficiency at age 38. At the time of diagnosis, my B12 levels were in the 100s. My Internist gave me ONE shot and then put me on daily dose of B12 tablet. I had a hard time remembering to take the pills and thus my B12 levels remained below normal. We moved to 1 shot/month. Still, as of 8 weeks ago my B12 is around 300. Finally, after complaining of persistent exhaustion (14 months after initial diagnosis) my Internist prescribed 1 injection per week for 4 weeks, then wait 2 weeks and return to the lab for a blood test. My level as of a week ago is now at 451. Given my result, she has prescribed 1 injection per month on an ongoing basis. I have asked her to please increase my prescription to 2x/month because I'm already feeling fatigued and had a noticeable boost in energy when I was taking 1 injection per week. What are normal B12 reference ranges? If 4 injections has upped my B12 from 300 to 451, is that good? Will I be able to maintain good B12 levels on monthly injections? TIARhondamba One shot a month is torture, 3 days of improvment at b est and 27 days going down the tubes. This protocol is obsolete and ineffective, A good natural b12 sublingual daily is 100-10,000 times more effective.
    Freddd 3576 Replies
    • December 30, 2008
    • 06:07 PM
    • 0
    Flag this Response
  • I cannot follow the link posted for Sally Pollchak R.N. Just let me add my lay person's 2 cents: 1) Get your urine MMA tested (uMMA). Blood levels can vary widely, whereas testing this protein in your urine will tell you about the effects of the B12 deficiency, and not the blood levels. See this link which quotes medical studies: http://www.veganhealth.org/b12/levels 2) There are sublingual pills for B12 that are tiny: you just place one under your tongue and go about your life while it dissolves in seconds (ok, maybe a minute). This is supposed to provide the best natural absorption, better than swallowing a pill (note that an injection does not qualify as "natural"). Good luck! http://forums.wrongdiagnosis.com/showthread.php?t=9948&page=144 thius will take you to that forum at the end,. Read from the latest bacwards to see the most current and effective knowledge.
    Freddd 3576 Replies
    • December 30, 2008
    • 06:08 PM
    • 0
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  • DearFredd:Where are the scientific articles to prove your allegations?There's a good article about B12 under Wickipedia that refutes some of your cherished beliefs.
    richard wayne2b 1232 Replies
    • January 2, 2009
    • 02:30 PM
    • 0
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  • DearFredd:Where are the scientific articles to prove your allegations?There's a good article about B12 under Wickipedia that refutes some of your cherished beliefs. There are many hundreds of relatively recent journal articles that get at the biochemical and theraputic differences between methylb12 and the inactive cobalamins. However, historically it has taken about 70 years from the time of "some articles" until much fuller understanding is attained. It took approximately 60 years from the early articles linking folate deficiency with neural tube defects until it entered "common knowledge" and some foods being supplemented in order to prevent neural tube defects resultinmg in a 27% decline. It will probably be another 50 years until methylb12 is supplemented to prevent another chunk of neural tube defects. Methylb12 just became easily available in the USA in 1998. Most of the research predating that was from Japan. There is no way any article can refute my healing and that of many others. It's not based on beliefs but on pragmatic results. There is not theory or belief to be refuted. I'm talking about real world life on the line results. That is games intellectuals play. I'm not an accademic or manufacturer of bulk biologicals. I don't have any need to defend 60 years of faulty research and understanding based on the laboratory mistake converting methylb12 in liver extract to cyanob12 and thus misidentfying the "protein mystery factor" that won a Nobel prize. This mistake was very quietly corrected in 1959 with research that properly identified the active in humans forms of b12 as methylb12 and adenosylb12. All of the research based on hydroxyb12 and cyanob12 is like going to see the amazing violin playing horse. It's not about how well the horse can play the violin, it's that he plays it at all. The effects of cyanob12 and hydroxyb12 can be backed up by lab tests, as they must be, because they are too subtle to cause what most of us folks call healing. Both active b12s, mb12 and ab12 however have just the opposite effect. They, when the right brands are taken with the correct technique with ALL the necessary cofactors produce naked eye outright no ifs and or buts healing that make the effects of lab test only results look ridiculous. If the therapies based on the inactive cobalamins actually worked you would not see any of the "Living with pernicious anemia" type forums. Nobody would have any symptoms left that cause problems and ongoing misery. Right now I'm at the stage of reversing the numbness in my feet from subacute combined degeneration. I got rid of the dropfoot of 8 months ago, have my balance mostly back, still improving, have position of foot and ankle back, am no longer ataxic in the dark and have about 75% of the feeling back. The other 150 symtoms and signs are gone, reversed and healed over the past 5 years. One of the problems is the lack of stability of aqueous methylb12; it's hard to get consistently potent methylb12 for injection. When it breaks down to hydroxyb12 it just plain doesn't work and things not fully healed regress. It is this lack of stability that makes the manufactures not like it. However, in sublingual forms both methylb12 and adenosylb12 are quite reliable, in certain brands only. That's why it has taken 5 years, working through all the little roadblocks like brands that don't work and allow regression of symptoms, additional necessary cofactors and the like. However, the protocol is effective enough now as long as the specifications of brands and care for liquid methylb12 and cofactors are taken, that I could offer it on a money back guarantee of effectiveness to an HMO, on a percentage basis. People have to be willing to try different forms of some of the supplements as not everybody finds the same forms effective due to biochemical idiosyncracies; such as acetyl l-carnitine as compared to l-carnitine fumarate. However, the brands of active b12s is critical as most brands are not sufficiently active and so far nobody has found the specified brands to be less effective than the brands that tested poorly in a group of 5 hypersensitives. The Wikepedia info on b12 needs to be completely rewritten to be correct. It maintains much mythology based on a lab mistake. There are sufficient journal referances on the active b12s, especially mb12, that there would be no problem doing so. There are rampant unproven assumptions such as "everybody converts" and everybody converts adequately" from inactive b12s and that "everybody interconverts active b12s adequately" and that "everybody converts folic acid adequately" to methylfolate. They don't. About 50% don't and the other half top out at about 400mcg/day which is far from adequate for many even though they will test fine. The ranges on these things are a statistic basis and not on effectiveness. These assumptions are wrong. I can demonstrate this very easily. Just in myself and children I can demosnstrate the fallicy of these assumptions. I don't know what percentage of folks follow the assumptions, many appear to. They have no effect when taking active b12s or folate. Others however can get their life back and have loads of symptoms and puzzle docs right and left becasue what they "know" is wrong so they can't see the truth right in front of them. Also, journal articals don't use 30 different nutriants all at the same time and synthecize across 500 articles.
    Freddd 3576 Replies
    • January 2, 2009
    • 08:25 PM
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  • Dear Freddd:As Shakespeare said,''Methinks the lady doth protest too much.''
    richard wayne2b 1232 Replies
    • January 2, 2009
    • 10:27 PM
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  • Dear Freddd:As Shakespeare said,''Methinks the lady doth protest too much.'' I'm merely thorough. You implied a serious question which does get a serious answer. I can get verbose. You ****k a systyems analyst you might get a system download. My life and health was certainly at stake in all this. So is that of these people on the fourm who have not gotten effective answers. You may imply anything you like as you do above. I think it is rather arrogant of you to post the above to imply meaning in my explaining of the situation; the very short form by the way. The fat lady hasn't sung yet.
    Freddd 3576 Replies
    • January 2, 2009
    • 10:45 PM
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