Discussions By Condition: Medical Errors

B12 Deficiency for 3 Years Undiagnosed (Now Pregnant)

Posted In: Medical Errors 5 Replies
  • Posted By: KCarmen
  • March 14, 2009
  • 11:36 PM

B12 Deficiency & Pregnancy
Posted Today at 04:25 PM by KCarmen
I 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!

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5 Replies:

  • 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! Hi Kcarmen, Are you letting the sublingual methylb12 from Jarrow linger for 45 minutes unders tongue or upper lip? That will increase absorbtion to about 15% instead of the 1% at best if you chew it or slurp it down. Also, country life adenosylb12 sublingual (dibencozide) in same way will give you the other active b12. Monthly cyanob12 is terribly ineffective and pure torture. Metanx is good but B-Right plus sublingual is probably better. Metanx might be best because of the methylfolate (Metafolin) that helps utilize the methylb12. Solgor metafolin will do the trick also with B-right and Jarrow sublingual. A daily sublingual done properly should have your serum level over the top of the typical range. Why do you want injectable so much? Sublingual is much more reliable becasue injectable methyb12 is so fragile.
    Freddd 3576 Replies Flag this Response
  • Fredd thank you for your reply and knowledge. I will try these modes of utilizing the Jarrow and the B-right. The reason I stick to injections at this time is that I have never been able to get my serum b12 above 290 with sublingual or oral. With injections I've been able to get to 595. Especially in pregnancy when the baby consumes a lot of b12 oral or sublingual has barely got me to 290. Thank you.
    KCarmen 8 Replies Flag this Response
  • Hi Kcarmen, Are you letting the sublingual methylb12 from Jarrow linger for 45 minutes unders tongue or upper lip? That will increase absorbtion to about 15% instead of the 1% at best if you chew it or slurp it down. Also, country life adenosylb12 sublingual (dibencozide) in same way will give you the other active b12. Monthly cyanob12 is terribly ineffective and pure torture. Metanx is good but B-Right plus sublingual is probably better. Metanx might be best because of the methylfolate (Metafolin) that helps utilize the methylb12. Solgor metafolin will do the trick also with B-right and Jarrow sublingual. A daily sublingual done properly should have your serum level over the top of the typical range. Why do you want injectable so much? Sublingual is much more reliable becasue injectable methyb12 is so fragile.Freddd:I am still confused about cofactors. My pernicious anemia is being treated by jarrow b12 sub 2000. I'm trying to order other necessary vit's but am confused; ie, by above message. "Metanx is good but b-Right is better...Metanx might be best..." Please help this muddled mind sort through the maze. my symptoms have worsened this week: numbness in hands more severe and thighs down, esp feet are a mess. I just can't make heads or tails of it. atrophied brain is not helping. Please please take pity on person who can barely read. WHAT ARE THE MOST IMPORTANT ADDITIONS TO JARROW B12? JUST A FEW BASICS PLEASE. UNEMPLOYED FOR 5 YEARS AND NOW I KNOW WHY. Thanking you in advance, Freddd... I admire your knowledge and tenacity. pearl girl
    pearl girl 9 Replies Flag this Response
  • Dear Pearl Girl:If you don't have it get the book Could it be B12? This book will answer many of your questions regarding pernicious anemia. Although Pernicious Anemia may be treated with high level oral b12 some people don't respond well to methyl b12 as they may have more methyl in their bodies and they may respond better to cyanocobalamin or hydroxycobalamin. Also if your levels have been very low for a long time you may need to inject b12 until you are stable and then you can continue with oral treatment in high doses. For some people oral works very well right away for others injectable works better and for others a combination of both. I need a combination of both and too much methyl does not work for me either. Also I dont do very well with high doses of Folic Acid. My system has enough Folic Acid always and so my issue is only with the folate B12. You need to see what works for you. Jarrow is a good product. Remember you may need some shots to take care of your Neuropathy. Please get the book Could it be B12. Best wishes,KCarmen
    KCarmen 8 Replies Flag this Response
  • Freddd:I am still confused about cofactors. My pernicious anemia is being treated by jarrow b12 sub 2000. I'm trying to order other necessary vit's but am confused; ie, by above message. "Metanx is good but b-Right is better...Metanx might be best..." Please help this muddled mind sort through the maze. my symptoms have worsened this week: numbness in hands more severe and thighs down, esp feet are a mess. I just can't make heads or tails of it. atrophied brain is not helping. Please please take pity on person who can barely read. WHAT ARE THE MOST IMPORTANT ADDITIONS TO JARROW B12? JUST A FEW BASICS PLEASE. UNEMPLOYED FOR 5 YEARS AND NOW I KNOW WHY. Thanking you in advance, Freddd... I admire your knowledge and tenacity. pearl girl Hi Pearl girl, The most complete info is over on the b12 thread including a number of those experienced with pregnancy and nursing and b12 issues. Metanx contains oral methylb12, relatively ineffective compared to 1000 or 5000 Jarrow sublingual, a large dose of methylfolate EXCELLENT!, and a modest dose of P-5-P, the active form of b6. It lacks ALL the other b-complex factors. B-Right contains P-5-P at somewhat smaller dose but is taken twice a day and contains many b-factors. Solgar methylfolate 800mcg ought to be adequate for most folks in the methylfolate department. Folic acid isn't great as 50% of the people can't convert it adequately and the other 50% on barely do so. At doses tested methylfolate puts 7 times as much active methylfolate into the serum compared to folic acid. 2500mcg of oral methylb12 causes about 25mcg to be absorbed. 5000mcg of Jarrow sublingual allowed to linger for 45 minutes puts about 750+mcg into serum, 1000mcg about 150mcg. No one pill is best. To get a full multiple active form bcomplex B-Right is excellent, to get aq significant dose of methybl12, Jarrow sublingual and to get adequate methylfolate Solgar methylfolate. For maximum methylfolate Metanx is best at 2800mcg instead of 800mcg. Which is best depends upon what you consider moast important. If I were taking the Metanx because I needed large doses of methylfolate I would also take the B-right and the Jarrow sublingual. However, if I only needed normal doses of methylfolaqte I woulod take the B-right, Jarrow sublingual and Solgar methylfolate (Metafolin). Absolute Minimum Basics Jarrow 5000mcg sublingual at least 2 a day, 12 hours apart to start.Country Life Adenosylb12 (dibencozide) 3mg sublingual, 1 per daySolgar Metafolin (methylfolate) 800mcgJarrow B-rightOmega3 fishoils unless you eat fish 3 times a weekPotassium, 99mg any brand, 2 per day - prevent hypokalemia which can be triggered by startup healing. Minimum basics - these will greatly increase probability of healingCalcium, magnesium, zinc plus other minerals, 2 tablets a day as directions on label stateA&D, 10,000/1000 from fish liver oil preferredVitamin C 2000mg a dayVitamin E, 400 IU (alpha) with other 7 factors in a high gamma formula is best (NOW Foods) The two sets of these will give you an excellent chance of starting recovery as each of these vitamins and minerals are vitally needed for nerve and tissue healing and formation. at www.iherb.com all of these available very competitively, RED843 as a code will get you a $5 discount on first order. It also gives me the same which I will contribute to somebody who can't buy any vitamins if it ever accumulates to an amount able to do so. I buy the fishoil, calcium/mag/zinc, vitamin C at Costco in the store brand at some savings. Only specified brands make a difference as far as we have been able to tell, and those can make a BIG difference. Good luck. Come on over to the b12 deficiency forum.
    Freddd 3576 Replies Flag this Response
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