Discussions By Condition: Medical Stories

B12 Deficiency

Posted In: Medical Stories 9 Replies
  • Posted By: kevinmillhill
  • January 15, 2008
  • 08:05 PM

This is not really a new thread, but it seems the only way I can access this site and post on it - in the hope that my story may help others.

I am a 59yo male lacto-ovo-vegetarian of about 25yrs standing. About 5yrs ago, I began to get a "bzzz-ing" feeling in my hands when I nodded my head. Eventually, irritated by the phenomenon, and suspecting sponylosis/spondylitis, I went to see my GP. He agreed that these were possibilities, and sent me for an X-ray, which revealed some bone ingrowth in the cervical area. By now, though, the "bzzz-ing" had spread to my feet - something not so easily explained by intermittent pressure on my spinal cord when I nodded my head. My GP is a young man, and was quite new to the job at the time; he confessed himself puzzled. (Yes, we both now know all about Lhermitte's sign, and what can cause it; but that is now - this was then.) He decided to work from first principles, took bloods, urine samples, etc, and called me back a couple of days later. I was B12 deficient. (Knowing now how misleading the serum results can be, I think that I was very lucky that the deficiency was picked up at all.) I injected myself with hydroxocobalamin (1mg every 2 days for a month) and most of the "bzzz-ing" went away - but never completely.

Owing to an administrative error, I was not told of the need to continue the injections monthly or so after the initial treatment, and my GP (through the same error) was unaware that I had not been told.

In April 2007, I started losing my memory, and becoming confused; I found reasoning and deduction increasingly difficult; this proceeded to blurred/double vision, sweeping and distressing personality change, aggressiveness, paranoia, and hallucinations. Eventually, I could not walk, stand, or string a sentence together, and I had little control over my bowel movements. My GP became almost as frustrated as I was because of his inability to determine a diagnosis, and, eventually, I had to be admitted to hospital as an inpatient.

The doctors there turned out eventually to be about as much use as a chocolate teapot, although they did initially show willing. They suspected a neurological problem. I was X-rayed, CAT-Scanned, MRI-Scanned, Lumbar Punctured, Ultrasounded, etc, etc. I was discharged after a week with a Zimmer frame; the doctors (Medical and Neurological) said they suspected I might be suffering from malnutrition (!!??).

I live alone, in a fairly isolated location; I could not walk or drive, I faced losing my job, and my life was in ruins. I started planning my suicide, and I dulled the world by drinking heavily (vodka ordered in quantity via the Net, and delivered to my door). A friend eventually found me at the foot of the stairs, having s--t myself; I was promptly re-admitted. My state was a gift to the doctors; without further ado, with no further examination, and with no relevant supporting history, they decided that I was clearly a long-term alcoholic, and discharged me once again.

My daughter, and my work partner trawled the net, and decided that I was probably suffering from rip-roaring B12 Deficiency - blood serum results notwithstanding. They printed off some of what they found, and took it (along with me) to my GP. He was mortified at having missed the diagnosis, and apologised profusely (How I love and respect him for that, and for his earlier admission that he was groping in the dark. How much more honest and gallant than those arrogant know-nothings in the hospital). He totally agreed the findings and prescribed me a carpet-bombing quantity of hydroxocobalamin. He also said that - faced again with someone presenting with my symptoms - he would disregard "positive" serum results. Bless him!

My brain began to work again, and I became a Net expert myself, turning up Russian, Japanese, and Chinese papers on B12 Deficiency, its effect on the CNS, and the importance of methylcobalamine, rather than cyano- or hydroxo-cobalamine, to nerves, and to the myelin sheaths in particular. I followed these threads to the relevance of folic acid, and to the effects of "aggressive" doses of B12, Alpha-Lipoic Acid, and Acetyl L-Carnitine.

I am now back at work; drink is no longer an aspect of my life; and though I still have orthoses supporting my ankles, my walking steadily improves, and I intend doing without the orthoses from about March onwards. I hope to be back walking Scotland's mountains again in the summer. It's a big step from being in a wheelchair just 4 months ago! The Lhermitte's sign has gone completely, as has the "bzzz-ing" in my hands.

I list the "medication" I am taking - in the hope it can help others.

Folic Acid: 5mg oral daily.
Vitamin B "Strong": 2 Tabs oral daily.
Thiamine: 100mg oral daily (Yes, I know that I'm not an alcoholic, but I'm having so much success that I am reluctant to discontinue anything!)
Methylcobalamine: 10mg sublingual daily.
Alpha-Lipoic Acid: 600mg oral daily.
Acetyl L-Carnitine: 500mg oral daily.
Hydroxocobalamine: 1mg i/m monthly.
Methylcobalamine: 1mg i/m twice weekly.
(Injectable methylcobalamin can be obtained on the Net, but I am having trouble with either the supplier or the shipper, and - though I have paid for it - it still hasn't arrived. In the meantime, though, I have searched for (and found) reputable US and UK sources of sublingual liquid-form methylcobalamin. (Dissolved in pure water and glycerine, with sodium benzoate and natural flavouring as the only additives). I cautiously tried injecting this, and have experienced no side effects or untoward reactions.)

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  • This is not really a new thread, but it seems the only way I can access this site and post on it - in the hope that my story may help others. I am a 59yo male lacto-ovo-vegetarian of about 25yrs standing. About 5yrs ago, I began to get a "bzzz-ing" feeling in my hands when I nodded my head. Eventually, irritated by the phenomenon, and suspecting sponylosis/spondylitis, I went to see my GP. He agreed that these were possibilities, and sent me for an X-ray, which revealed some bone ingrowth in the cervical area. By now, though, the "bzzz-ing" had spread to my feet - something not so easily explained by intermittent pressure on my spinal cord when I nodded my head. My GP is a young man, and was quite new to the job at the time; he confessed himself puzzled. (Yes, we both now know all about Lhermitte's sign, and what can cause it; but that is now - this was then.) He decided to work from first principles, took bloods, urine samples, etc, and called me back a couple of days later. I was B12 deficient. (Knowing now how misleading the serum results can be, I think that I was very lucky that the deficiency was picked up at all.) I injected myself with hydroxocobalamin (1mg every 2 days for a month) and most of the "bzzz-ing" went away - but never completely. Owing to an administrative error, I was not told of the need to continue the injections monthly or so after the initial treatment, and my GP (through the same error) was unaware that I had not been told. In April 2007, I started losing my memory, and becoming confused; I found reasoning and deduction increasingly difficult; this proceeded to blurred/double vision, sweeping and distressing personality change, aggressiveness, paranoia, and hallucinations. Eventually, I could not walk, stand, or string a sentence together, and I had little control over my bowel movements. My GP became almost as frustrated as I was because of his inability to determine a diagnosis, and, eventually, I had to be admitted to hospital as an inpatient. The doctors there turned out eventually to be about as much use as a chocolate teapot, although they did initially show willing. They suspected a neurological problem. I was X-rayed, CAT-Scanned, MRI-Scanned, Lumbar Punctured, Ultrasounded, etc, etc. I was discharged after a week with a Zimmer frame; the doctors (Medical and Neurological) said they suspected I might be suffering from malnutrition (!!??). I live alone, in a fairly isolated location; I could not walk or drive, I faced losing my job, and my life was in ruins. I started planning my suicide, and I dulled the world by drinking heavily (vodka ordered in quantity via the Net, and delivered to my door). A friend eventually found me at the foot of the stairs, having s--t myself; I was promptly re-admitted. My state was a gift to the doctors; without further ado, with no further examination, and with no relevant supporting history, they decided that I was clearly a long-term alcoholic, and discharged me once again. My daughter, and my work partner trawled the net, and decided that I was probably suffering from rip-roaring B12 Deficiency - blood serum results notwithstanding. They printed off some of what they found, and took it (along with me) to my GP. He was mortified at having missed the diagnosis, and apologised profusely (How I love and respect him for that, and for his earlier admission that he was groping in the dark. How much more honest and gallant than those arrogant know-nothings in the hospital). He totally agreed the findings and prescribed me a carpet-bombing quantity of hydroxocobalamin. He also said that - faced again with someone presenting with my symptoms - he would disregard "positive" serum results. Bless him! My brain began to work again, and I became a Net expert myself, turning up Russian, Japanese, and Chinese papers on B12 Deficiency, its effect on the CNS, and the importance of methylcobalamine, rather than cyano- or hydroxo-cobalamine, to nerves, and to the myelin sheaths in particular. I followed these threads to the relevance of folic acid, and to the effects of "aggressive" doses of B12, Alpha-Lipoic Acid, and Acetyl L-Carnitine. I am now back at work; drink is no longer an aspect of my life; and though I still have orthoses supporting my ankles, my walking steadily improves, and I intend doing without the orthoses from about March onwards. I hope to be back walking Scotland's mountains again in the summer. It's a big step from being in a wheelchair just 4 months ago! The Lhermitte's sign has gone completely, as has the "bzzz-ing" in my hands. I list the "medication" I am taking - in the hope it can help others. Folic Acid: 5mg oral daily.Vitamin B "Strong": 2 Tabs oral daily.Thiamine: 100mg oral daily (Yes, I know that I'm not an alcoholic, but I'm having so much success that I am reluctant to discontinue anything!)Methylcobalamine: 10mg sublingual daily.Alpha-Lipoic Acid: 600mg oral daily.Acetyl L-Carnitine: 500mg oral daily.Hydroxocobalamine: 1mg i/m monthly.Methylcobalamine: 1mg i/m twice weekly.(Injectable methylcobalamin can be obtained on the Net, but I am having trouble with either the supplier or the shipper, and - though I have paid for it - it still hasn't arrived. In the meantime, though, I have searched for (and found) reputable US and UK sources of sublingual liquid-form methylcobalamin. (Dissolved in pure water and glycerine, with sodium benzoate and natural flavouring as the only additives). I cautiously tried injecting this, and have experienced no side effects or untoward reactions.) Hello Kevinmillhill, I was an ovolacto veggitarian for 25 years and it almost killed me despite 25 years of cyanob12. Here is the info you need. The Jarrow and Enzymatic formulas sublingual methylb12 are quite effective tested by 5 hypersensitives and compared with injection. Both those brands tested 5 stars, excellent in both short term and long term tests. Seven brands tested 1-3 stars. One brand rated ZERO stars, completely ineffective allowing return of symtoms at same rate as NO methylb12 at all. Both of these 2 superior brands as well as adenosylb12 from Country Life appear to absorb sublingually at between 10 and 15 percent when allowed to linger as long as possible. Taking 6-10 of the 5mg Jarrow (depending upon the person) in an hour produced both an observable effect compared to a 5mg methylb12 injection daily and more observable b12 excreted in urine than a 5mg injection, more like a 6.5mg injection. You would do better and safer to take the Jarrow sublinguals every day over any injection each 3 days. A single 1 or 5 mg Jarrow or Enzymatic Therapy sublingual daily will keep your average serum level higher than an injection every few days. I inject 5mg or more of methylb12 every day. The only reason was to see if I could find the point at which neurological healing upregulates to heal what appears to be otherwise permanent damage (2.5 years sublingual, almost 2 years injecting, without healing certain stubborn things so far). I will have more to say on that perhaps in some weeks. With a prescription, University Pharmacy in Salt Lake City, Utah USA sells injectable methylb12 in a 250mg 10ml vial for about US$110. As it has to be shipped refrigerated I would get half a dozen vials at a time if I could. Subcutaneous injection works at least as well as IM and one can use those 31 gauge 5/16" .3ml (or .5ml) insulin syringes with 0.2mg = 5 mg of methylb12. My own experience is that l-carnitine fumarate actually produced significantly superior noticable effects compared to aceytal l- carnitine and was much superior. I currently take 2000mg of l-carnitine fumarate daily. http://forums.wrongdiagnosis.com/showthread.php?t=9948&page=28 here is a link to a b12 thread with lots of information. I had a probelm similar to yours. I had to login again and then I could go anywhere.
    Freddd 3576 Replies
    • January 18, 2008
    • 10:15 PM
    • 0
    Flag this Response
  • Dear Fredd, Thank you very much for the post, and the info re navigating this site. I am able to obtain the fumarate relatively cheaply within the UK. The cheapest Jarrow Formulas' methylcobalamin, on the other hand, is in the US, so that's where I'll buy it! Even the cheapest is comparatively expensive - but a small price to pay when you have very nearly been tipped on to life's scrapheap! University Formulas are a bit more of a problem. I need to ask them about UK GPs' prescriptions, refrigerated shipping, shipping charges etc. I can find the business's website easily enough, but cannot find an e-mail address that is not rejected by the system. I may yet have to resort to writing them an old-fashioned letter!! Thank you once again.
    kevinmillhill 1889 Replies
    • January 19, 2008
    • 00:37 PM
    • 0
    Flag this Response
  • Hi Kevinmillhill, The fumarate version worked best for me. However, that was with personal testing of first, the fumarate because that is what I ordered and then the aceytal because that got all the recomendations. Then I tried a combo of those 2. Only the fumarate by itself had that amazing effect. It's most noticable effect was in energy and I took off 45 pounds of water in the first 5 months. Keep a diary on how each thing affects you. Over a period of time you may be amazed at all the things that change. How is one kind versus another? I was a little "stimulated" the first 6 months which was great after 16 years of crippling fatigue. Immediately after starting it my Nordic Track time doubled from 17 minutes to 34 minutes easily, no push at all. l-carnitine helps transport fat into the mitochondria among many other things. This, along with Country Life Dibencozide (adenosylcobalamin) work together in energy production. This is further aided by alpha lipoic acid. The Jarrow B-Right is an excellent b-complex of moderate strength with multiple coenzyme b-vitamins. It can be taken twice a day and doesn't cause stomach discomfort. Looking back five years it's hard to believe all the symtoms I had and how totally miserable I was. Having it in writing helps. www.iherb.com has great prices and handles international sales.
    Freddd 3576 Replies
    • January 19, 2008
    • 06:06 PM
    • 0
    Flag this Response
  • I have just ordered the book. I had my serum B12 and folate blood tests back and was told no problems as B12 was 770 and folate 16.3. I have muscle twitches cramp feet tingling weak muscles and dropped foot balance problem. This has went on for 18months with no treatment or diagnoises. I now have broken sleep. When i got my results i asked about MMA and homocysteine levels got told "whats that" I have had hereditary diverticula for about 20years as this is a condition that can slow the movement of food though the intestine i have read that this can cause B12 absorb problems. I have fallen down stairs due to leg giving way. I struggle with everything. The past 18mths has been awful. I've been offered jobs that i had to turn down. My mum had dementia no B12 was taken then ether. I go to the hospital next week hopfully armed with the book. I'm in Scotland but there seems to be a lack of knowledge in how to test B12Dear life back wanted,Please register on the site (so that we can track your postings) and tell us a bit more. Look at where I live - a fellow Scot. Read Freddd's list of signs/symptoms at posting #2679, and see just how many you have. Realise that the people on this site seriously KNOW about B12 Deficiency, and that we can help. Please read this link to understand my "tale of woe", and to realise that you are not alone:-http://forums.wrongdiagnosis.com/showthread.php?p=77754#post77754
    kevinmillhill 1889 Replies Flag this Response
  • Dear life back wanted, What I should also have said (above) is "Come across and join us on the B12 Forum". It's still part of this site. Here is a link: http://forums.wrongdiagnosis.com/showthread.php?t=9948&page=301
    kevinmillhill 1889 Replies Flag this Response
  • B12 deficiency is so hard to get anyone to give the right answers in the medical community in the U.S. I am amazed. My story is as follows:B12 Deficiency & Pregnancy Posted Today at 04:25 PM by KCarmenI suffered an undiagnosed b12 deficiency for 3 years. I developed neurological symptoms, heart palpitations etc. before being diagnosed. My b12 deficiency originated while taking a pill called Yasmin which since then I've been shown studies that this pill can do this drop b12 levels, but no one in my medical circle ever tested my b12 until I was very sick. Once I was tested I had serum b12 levels of 150! Mind you I was taking supplements, so I can't imagine how low the test would of come back if I had not. As well as serum b12 of 150 I had low ferritin, slightly elevated homocystine levels and a few other things. I did not have elevated MMA, so they thought I did not fit the classic b12 deficiency, but I now know, especially since reading the b12 book that the medical community is very confused about b12! I was given cyanocobalamin injections. They worked very well. For the first time in 3 years I began to feel much better. I do have some damage that the minute b12 level goes down symptoms are back, but for the most part I got my health back with injecting, but I can't let levels go down or I feel awful again. I am currently pregnant and began to feel funny. I am in my 6th month of pregnancy. My b12 levels were low. I was concerned about injections during pregnancy as my OBGYN was not well informed and the cyanocobalamin I had had aluminum and benzyl alcohol as preservatives, so I was very fortunate to be able to get Optovite b12 shots in Spain that I brought back with me. No aluminum, no benzyl alcohol only saline water as a preservative. I gave myself a shot and felt much better. And more comfortable about less preservatives. Now my b12 levels are low again. Other than this my pregnancy has gone well so far. I am also taking Jarrow oral methylcobalamin, but it seems like the shot is what really makes a difference for me. While pregnant I found out I am MTHFR positive. I have one copy of the C677T mutation and one copy of the A1298C mutation. I was told this makes it harder to assimilate folates. I have always had normal folic acid serum test results, so it seems for me b12 is the issue. My confusion, concerns and questions are as follows:Is it OK for me to inject again cyanocobalamin while pregnant? Is their any risk to baby? (cyanide) My most recent ultrasound shows a very healthy active baby boy! He kicks me a lot. I am also taking oral jarrow Methylcobalamin. My doctor has mentioned Metanx. No one seems to want to give me a prescription for hydroxycobalamin or injectable methylcobalamin, which drives me nuts! So what I have is optovite b12 shots.Once I have the baby can I breast feed while injecting b12 once a month as usual? Also will cyanocobalamin shots during breast feeding be a problem? Is the baby better off with formula vs. breast milk? Outside of the b12 issue I am very healthy regarding my pregnancy and I would assume breast milk. It appears all my doctors are completely confused on this matter. I am a very concerned Mom! I need some answers as to what is best for baby and myself regarding b12 deficiency. Thank you!
    KCarmen 8 Replies Flag this Response
  • B12 deficiency is so hard to get anyone to give the right answers in the medical community in the U.S. I am amazed. My story is as follows: B12 Deficiency & Pregnancy Posted Today at 04:25 PM by KCarmenI suffered an undiagnosed b12 deficiency for 3 years. I developed neurological symptoms, heart palpitations etc. before being diagnosed. My b12 deficiency originated while taking a pill called Yasmin which since then I've been shown studies that this pill can do this drop b12 levels, but no one in my medical circle ever tested my b12 until I was very sick......... .....It appears all my doctors are completely confused on this matter. I am a very concerned Mom! I need some answers as to what is best for baby and myself regarding b12 deficiency. Thank you! Dear KCarmen, I very nearly missed your posting, but it popped up as an e-mail to me. There is a huge, well-informed thread on the subject of B12 Deficiency, its management and its consequences. It gets about 1500 visits a day, and is populated by correspondents who can talk about all aspects of the problem from the point of view of their experience in dealing with it. It has over 7,000 postings! Currently there is a lady posting there - Rosebud - who is nursing her fifth baby. The present page of the thread is here: http://forums.wrongdiagnosis.com/showthread.php?t=9948&page=728 If you copy the whole of your posting (above) and re-post it on the thread, you'll get plenty of information about all of the questions you are asking. Initial posts have to be read by a moderator, and so can take some time to appear; when they do appear, they get slotted into their correct places back in the time sequence. In a thread that moves as quickly as ours does, that means that initial postings tend to get buried; however, I'll keep looking out for it. In the meantime, you may care to do some background reading on the thread; if you start by going to P577 http://forums.wrongdiagnosis.com/showthread.php?t=9948&page=577 you’ll find a set of postings (5769 – 5773) which will give you a broad-brush treatment of the whole subject. If you then go to P658 http://forums.wrongdiagnosis.com/showthread.php?t=9948&page=577 you’ll find an up-to-date list of the huge number of ways B12 Deficiency can manifest itself. I appreciate that – since you already know that you’re deficient - some of the information in those posts will not be directly relevant to you, but read them anyway. After that, come back to the current end of the thread, and read backwards for an hour or so. You’ll get an idea of how we work, and how much can be achieved. Most contraceptive pills deplete B12; however, reading about it just now, Yasmin appears to be in a class of its own! I see that Optovite’s “active ingredient” (not a particularly good description under the circumstances) is cyanocobalamin. You can manage B12 Deficiency perfectly well without injections – just by the use of sublingual methylcobalamin; plenty of people do. You need to take a few other things besides, but that is what the thread unceasingly talks about. You’ll also see that there is a way around the folic acid problem – l-methylfolate. Metanx is l -methylfolate, plus a particular form of vitamin B6, and 2mg of methylcobalamin. It also appears that you swallow it, which is no way to get B12 into your bloodstream. You’ll find those three substances (plus a couple of others) on the list we describe as “the basics”. 2mg, furthermore, is a very small amount of methylcobalamin. All will become clear once you’ve done a bit of reading. I look forward to finding your post on the thread.
    kevinmillhill 1889 Replies Flag this Response
  • Dear Kevin:Thank you for your reply and assistance on how to better use the blog and also for your B12 supplementation details. I look forward to as much knowledge, experience and advise...Kind regards and good wishes, KCarmen.:)B12 Deficiency And Pregnancyby KCarmenI suffered an undiagnosed b12 deficiency for 3 years. I developed neurological symptoms, heart palpitations etc. before being diagnosed. My b12 deficiency originated while taking a pill called Yasmin which since then I've been shown studies that this pill can do this drop b12 levels, but no one in my medical circle ever tested my b12 until I was very sick. Once I was tested I had serum b12 levels of 150! Mind you I was taking supplements, so I can't imagine how low the test would of come back if I had not. As well as serum b12 of 150 I had low ferritin, slightly elevated homocystine levels and a few other things. I did not have elevated MMA, so they thought I did not fit the classic b12 deficiency, but I now know, especially since reading the b12 book that the medical community is very confused about b12! I was given cyanocobalamin injections. They worked very well. For the first time in 3 years I began to feel much better. I do have some damage that the minute b12 level goes down symptoms are back, but for the most part I got my health back with injecting, but I can't let levels go down or I feel awful again. I am currently pregnant and began to feel funny. I am in my 6th month of pregnancy. My b12 levels were low. I was concerned about injections during pregnancy as my OBGYN was not well informed and the cyanocobalamin I had had aluminum and benzyl alcohol as preservatives, so I was very fortunate to be able to get Optovite b12 shots in Spain that I brought back with me. No aluminum, no benzyl alcohol only saline water as a preservative. I gave myself a shot and felt much better. And more comfortable about less preservatives. Now my b12 levels are low again. Other than this my pregnancy has gone well so far. I am also taking Jarrow oral methylcobalamin, but it seems like the shot is what really makes a difference for me. While pregnant I found out I am MTHFR positive. I have one copy of the C677T mutation and one copy of the A1298C mutation. I was told this makes it harder to assimilate folates. I have always had normal folic acid serum test results, so it seems for me b12 is the issue. My confusion, concerns and questions are as follows:Is it OK for me to inject again cyanocobalamin while pregnant? Is their any risk to baby? (cyanide) My most recent ultrasound shows a very healthy active baby boy! He kicks me a lot. I am also taking oral jarrow Methylcobalamin. My doctor has mentioned Metanx. No one seems to want to give me a prescription for hydroxycobalamin or injectable methylcobalamin, which drives me nuts! So what I have is optovite b12 shots.Once I have the baby can I breast feed while injecting b12 once a month as usual? Also will cyanocobalamin shots during breast feeding be a problem? Is the baby better off with formula vs. breast milk? Outside of the b12 issue I am very healthy regarding my pregnancy and I would assume breast milk. It appears all my doctors are completely confused on this matter. I am a very concerned Mom! I need some answers as to what is best for baby and myself regarding b12 deficiency. Thank you!
    KCarmen 8 Replies Flag this Response
  • Dear Kevin: Thank you for your reply and assistance on how to better use the blog and also for your B12 supplementation details. I look forward to as much knowledge, experience and advise...Kind regards and good wishes, KCarmen. Dear KCarmen, In case you haven't already read it, I have spotted your re-posting on the "Vitamin B12 Deficiency is Commonly Misdaignosed" thread, and have moved it up to the current page http://forums.wrongdiagnosis.com/showthread.php?t=9948&page=730 along with the bulk of my reply. They form posting #7300. I hope that you get the advice you need. If not, though, keep asking; it's amazing how persistent we can be!!
    kevinmillhill 1889 Replies Flag this Response
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