Beware B Vitamin Toxicity!

[squirmingitch]

I know this is just a typo--but it cracked me up.

I pictured this young, good looking guy who.....

but I digress!

Cracked me up too. I was thinking along the same lines IH.

[Ninja]

Pernicious anemia is a decrease in red blood cells that occurs when your intestines cannot properly absorb vitamin B12.

No need to do all that typing or scanning! Too much work. I just wanted to know HOW she came up with the additional tests that she says should be used IN connection with the serum B-12 test ?

I am just curious!

Elevated homocysteine levels can occur for a variety of reasons (post-menopausal women for example can have elevated levels)

but in essence, what you are saying is,

if a doctor suspects a B-12 def and the B-12 levels are "within normal range" and the patient still has B-12 symptoms (which mimic everything from a stroke to Alzheimer's), there are other tests that may help determine a B-12 def?

Yes, kind of like the thyroid testing. Most doc's only test TSH but TSH only gets at part of the picture. Conversely, a stroke or Alzheimer's can mimic a B12 deficiency.

I know what pernicious anemia is but you asked how she dx's/tests for it. That was the info I didn't want to garble. Here's a quote:

"This diagnosis [pernicious anemia] is properly reserved for the autoimmune phenomenon that results in disease and dysfunction of the stomach (gastric atrophy, poor stomach acid production, intrinsic factor deficiency, and gastric autoantibodies directed against intrinsic factor and/or parietal cells)."

And another:

"Diagnosing Pernicious Anemia: A Note For Physicians

The criteria for the diagnosis of autoimmune pernicious anemia (PA) include:

1. Presence of corpus-restricted atrophy, with or without a spared antrum, as shown by EGD of the stomach.

2. Presence of hyperplasia of enterochromaffin-like (ECL) cells.

3. Hypochlorhydria or achlorhydria (poor or no stomach acid).

4. Elevated fasting serum gastrin.

5. Decreased levels of pepsinogen I.

6. Anti-parietal cell antibody (is found in 90% of people with PA, but its specificity is only 50%)

7. Anti-intrinsic factor antibody (is very specific for PA, but has a low sensitivity of 50%)"

As for the various tests and their explanations — I will scan them in as soon as I can because it is way too long for me to type – but very valuable, IMO.

[IrishHeart]

Cracked me up too. I was thinking along the same lines IH.

where are our heads???

[IrishHeart]

Yes, kind of like the thyroid testing. Most doc's only test TSH but TSH only gets at part of the picture. Conversely, a stroke or Alzheimer's can mimic a B12 deficiency.

I know what pernicious anemia is but you asked how she dx's/tests for it. That was the info I didn't want to garble. Here's a quote:

"This diagnosis [pernicious anemia] is properly reserved for the autoimmune phenomenon that results in disease and dysfunction of the stomach (gastric atrophy, poor stomach acid production, intrinsic factor deficiency, and gastric autoantibodies directed against intrinsic factor and/or parietal cells)."

And another:

"Diagnosing Pernicious Anemia: A Note For Physicians

The criteria for the diagnosis of autoimmune pernicious anemia (PA) include:

1. Presence of corpus-restricted atrophy, with or without a spared antrum, as shown by EGD of the stomach.

2. Presence of hyperplasia of enterochromaffin-like (ECL) cells.

3. Hypochlorhydria or achlorhydria (poor or no stomach acid).

4. Elevated fasting serum gastrin.

5. Decreased levels of pepsinogen I.

6. Anti-parietal cell antibody (is found in 90% of people with PA, but its specificity is only 50%)

7. Anti-intrinsic factor antibody (is very specific for PA, but has a low sensitivity of 50%)"

As for the various tests and their explanations — I will scan them in as soon as I can because it is way too long for me to type – but very valuable, IMO.

Hold on, hon. You're doing too much work!! Maybe I am not making myself clear in what I am asking, sorry!

I know how the medical community tests for pernicious anemia...

here is what I am asking:

How does the author of this book --someone who self-diagnosed her B-12 anemia--suggest doctors should determine that a B-12 deficiency exists BESIDES using the B-12 serum test--if (as she says) the standard B-12 test is insufficient?

Can't you just summarize the list of tests??

I don't mean to make your work so hard!!!

[Ninja]

OH. Lol, don't worry about the work! Sorry!

Serum B12, urinary/serum MMA, HCY test, HoloTC test. OR if the level falls below 450 do a trial of B12 supplementation. Wish I could get the scans to you. Attaching through this forum software is wonky. Hopefully I'm understanding you correctly this time.

[IrishHeart]

OH. Lol, don't worry about the work! Sorry!

Serum B12, urinary/serum MMA, HCY test, HoloTC test. OR if the level falls below 450 do a trial of B12 supplementation. Wish I could get the scans to you. Attaching through this forum software is wonky. Hopefully I'm understanding you correctly this time.

That list is perfect, hon!

Readers may want to know about this--so they can ask their doctors!

You "did good".

Thanks a bunch!

[Chad Sines]

I have long suspected that many of these larger doses are hurting people. Way too many self prescribe and honestly have no clue what they consume from food and supplements.

[Bubba's Mom]

Instead of helping with parasthesia, mega-doses of B6 and/or B-12 can can cause it.

The Bs work synergistically in the body. Too much of one can unbalance the others. That is why they are marketed in B-COMPLEXES.

It happened to me. It was suggested (by one doctor and a ND) that I take B6 for nerve pain, B5 for adrenal support, Biotin (B7) for hair loss and I was already taking a B complex (200 mg) on my own; then, my PC doctor told me to take Folic acid (B9) by prescription (for anemia) and high doses of sublingual B-12 (for anemia) and soon, I had INCREASED burning nerve pain (the very thing I was trying to resolve because I BURNED with neuropathy for 3 years)and I felt sick to my stomach constantly.

My new GI doctor took one look at the list of supplements I was taking, saw my recent blood work with very high B-12 and Folate levels and said "Stop taking all those things!! You're toxic!"

I can imagine you'd be over dosed with taking a B complex AND large doses of the separate B's!

I take a B complex which is not a dramatic amount.

We have to use common sense with these things.

When I look at the list of foods that B's naturally occur in, I know I don't eat very many of those things. I was also DXed with severe intestinal damage along the whole length of intestine with malabsorption.

In my case.. I think that B complex is what is keeping me functional?

I might also add..I've had numerous blood draws over the past year. I still test low in some things..even with supplements.

I think the first thing one should do is, ask for a blood panel to be drawn so you know where you are before supplementing anything?

[IrishHeart]

I think the first thing one should do is, ask for a blood panel to be drawn so you know where you are before supplementing anything?

EXACTLY my point! and yes, after supplementing for a few months, check them again!

The worst part was MY DOCTORS told me to take them!! But no follow up levels were done ( was naive and still in gluten head back then )...until my new GI took over and I asked --can you test my B levels and iron and TSH and T4 and T3 please??!!!

That's when we saw it.

My GI doc is a (loveable and concerned) pain in the butt about this. We test me every 3 months, after that fiasco.

I do not even take a B complex anymore. Just a multivitamin, D-3 (I was deficient in that too) and calcium/magnesium. Probiotics.

At one point, they had me on 18 different supps/herbals/vits.

I know better now.

[Bubba's Mom]

EXACTLY my point! and yes, after supplementing for a few months, check them again!

The worst part was MY DOCTORS told me to take them!! But no follow up levels were done ( was naive and still in gluten head back then )...until my new GI took over and I asked --can you test my B levels and iron and TSH and T4 and T3 please??!!!

That's when we saw it.

My GI doc is a (loveable and concerned) pain in the butt about this. We test me every 3 months, after that fiasco.

I do not even take a B complex anymore. Just a multivitamin, D-3 (I was deficient in that too) and calcium/magnesium. Probiotics.

At one point, they had me on 18 different supps/herbals/vits.

I know better now.

It's scary that Dr.s would prescribe such high does and not do follow up! I've heard that nutrition is an elective course for Dr.s? It seems like the study of vitamins/minerals and diet should be mandatory!

I guess writing an RX to offset symptoms that crop up is easier?

[IrishHeart]

It's scary that Dr.s would prescribe such high does and not do follow up! I've heard that nutrition is an elective course for Dr.s? It seems like the study of vitamins/minerals and diet should be mandatory!

I guess writing an RX to offset symptoms that crop up is easier?

In my case, it was "too many cooks"....

[Ninja]

It's scary that Dr.s would prescribe such high does and not do follow up! I've heard that nutrition is an elective course for Dr.s? It seems like the study of vitamins/minerals and diet should be mandatory!

I guess writing an RX to offset symptoms that crop up is easier?

Sadly, I'm not sure the classes that are mandatory are working... but I see what you mean.

[Bubba's Mom]

Sadly, I'm not sure the classes that are mandatory are working... but I see what you mean.

[ravenwoodglass]

I can imagine you'd be over dosed with taking a B complex AND large doses of the separate B's!

I take a B complex which is not a dramatic amount.

We have to use common sense with these things.

When I look at the list of foods that B's naturally occur in, I know I don't eat very many of those things. I was also DXed with severe intestinal damage along the whole length of intestine with malabsorption.

In my case.. I think that B complex is what is keeping me functional?

I might also add..I've had numerous blood draws over the past year. I still test low in some things..even with supplements.

I think the first thing one should do is, ask for a blood panel to be drawn so you know where you are before supplementing anything?

I agree with everyone getting tested for vitamin levels and that they should get them rechecked periodically. I think the real danger for B vit toxicity lies more with the general population that is using high levels of these in addition to eating regular wheat based goods. Many wheat breads and cereals are fortified with the B vitamins, something that isn't done with gluten free breads and cereals. We also know that when our intestines are damaged as much as they are with us at diagnosis we often haven't been absorbing our vitamins and meds like folks without celiac. It is good to get a base line from checking the levels through testing if our doctors will do it and we do need to make sure if we are seeing more than one doctor that we make sure to let all of them know what we are taking and at what levels as we should do with any drug especially since as we heal we will absorb more from our food and whatever supplements and drugs we are taking. Many don't think of vitamins as drugs and don't mention them to doctors and too many doctors don't think to ask.

[Bubba's Mom]

I agree with everyone getting tested for vitamin levels and that they should get them rechecked periodically. I think the real danger for B vit toxicity lies more with the general population that is using high levels of these in addition to eating regular wheat based goods. Many wheat breads and cereals are fortified with the B vitamins, something that isn't done with gluten free breads and cereals. We also know that when our intestines are damaged as much as they are with us at diagnosis we often haven't been absorbing our vitamins and meds like folks without celiac. It is good to get a base line from checking the levels through testing if our doctors will do it and we do need to make sure if we are seeing more than one doctor that we make sure to let all of them know what we are taking and at what levels as we should do with any drug especially since as we heal we will absorb more from our food and whatever supplements and drugs we are taking. Many don't think of vitamins as drugs and don't mention them to doctors and too many doctors don't think to ask.

You make a good point. Many don't think of vtamins/supplements as drugs, but they should. They can change the way RXs work too.

I have a list of all meds, and all supplements written down and I take it with me when seeing any Dr. My new Internist looked at the list and said "that's a lot of supplements". She did a blood panel and when I went back to see her she said my blood work is looking good..keep doing what I'm doing.

The testing is really key to supplements IMO. It can be dangerous to just start taking things without knowing your levels. Iron is one that shouldn't be taken unless tested first, for example.

[IrishHeart]

You make a good point. Many don't think of vtamins/supplements as drugs, but they should. They can change the way RXs work too.

I have a list of all meds, and all supplements written down and I take it with me when seeing any Dr.

Yes! This is exactly what I did ----and still do.

But the question is...do they all LOOK at it?

When I was given the B-12 and Folate supps because of deficiencies, they both SAW it. They both knew I was supplementing.

One test came back HIGH B6, so he said stop that, but he did not say stop ALL the Bs. The other one came back HIGH B-12, so I was told to cut back. The PCP guy says, "No! take it for life."

See what I mean?

Too many cooks.

I stick with my ONE GI doc now and go with his recommendations, based on test levels and how I feel. he is the one who said Toxicity can occur. And I think he was right, I feel BETTER off the high B's and the neuropathy that increased has nearly diminished.

I know so much more than I did 3 years ago and I never would have put up with this BS had I been better informed.

[quincy]

Yes! This is exactly what I did ----and still do.

But the question is...do they all LOOK at it?

When I was given the B-12 and Folate supps because of deficiencies, they both SAW it. They both knew I was supplementing.

One test came back HIGH B6, so he said stop that, but he did not say stop ALL the Bs. The other one came back HIGH B-12, so I was told to cut back. The PCP guy says, "No! take it for life."

See what I mean?

Too many cooks.

I stick with my ONE GI doc now and go with his recommendations, based on test levels and how I feel. he is the one who said Toxicity can occur. And I think he was right, I feel BETTER off the high B's and the neuropathy that increased has nearly diminished.

I know so much more than I did 3 years ago and I never would have put up with this BS had I been better informed.

I have read that people suffering with bladder problems should avoid B6, so lately I have not been taking anything with b6 but getting it from foods I eat. People with IC are very familiar with this I imagine. I decided to eliminate the b6 supplements for this reason.

[frieze]

at least some of the reported problems with B6 were from taking pyrodoxine, instead of P5P.

also, if you have the geneic error that makes it not possible for you to methylate properly, you will have a build up of unusable but measurable vitamins in your blood.

[Chad Sines]

Many, but clearly not all, of us have made the assumption that we are low on certain vitamins and minerals without ever being tested. When you think about it, it is really not a smart way for us to approach supplementation.

[IrishHeart]

Many, but clearly not all, of us have made the assumption that we are low on certain vitamins and minerals without ever being tested. When you think about it, it is really not a smart way for us to approach supplementation.

and there it is ....thank you for echoing what I have been trying to get across in this thread all along!

( my work here is finished... :lol: time for lunch....)

[floral]

I also have malabsorption issues and take Vit B shots. I have noticed that my B12 levels are too high when my MD checks just after I've taken a shot. Perhaps timing is everything in this case. P.S. I don't feel that the shots are effective anymore. They used to make me feel better and have more energy. They say I'll have to take them for the rest of my life but I beg to differ.

[ravenwoodglass]

I also have malabsorption issues and take Vit B shots. I have noticed that my B12 levels are too high when my MD checks just after I've taken a shot. Perhaps timing is everything in this case. P.S. I don't feel that the shots are effective anymore. They used to make me feel better and have more energy. They say I'll have to take them for the rest of my life but I beg to differ.

Why is your MD testing you right after you have had an injection? He should be checking before the test. Or is a different doctor doing the injections? If that is the case tell your MD so he can schedule a test before you get the shots.

[cavernio]

Many, but clearly not all, of us have made the assumption that we are low on certain vitamins and minerals without ever being tested. When you think about it, it is really not a smart way for us to approach supplementation.

Because our digestive systems are proven damaged and most nutrients come from our food. Besides which, many doctors approach supplementation in much the same way, in that they won't actually test you and instead 'try things out'. If I could measure my nutrients daily I would, but I can't. I can't get them measured monthly either. If I feel bad and I cajole my doctor I MIGHT be able to get more than just my iron and b12 levels tested.

Oh, and even if I get tested, they'll tell me my b12 is fine when it's well below 500, because here it's low only if it's under 120 or something.

[sandsurfgirl]

Personally, I really HATE reading posts like this because they could actually harm someone if they actually have vitamin deficiencies and read the original post and just stop taking their supplements. Since you are not a medical professional, it may have been better to add that supplementing vitamins should be done with your doctor's knowledge and blood tests to monitor vitamin levels rather than to suggest that someone discontinue a supplement they are taking. Especially if they are taking it because they were instructed to by a doctor for an actual deficiency. Because those mega doses of b12 that you are so hard on are the only thing thing that is keeping me from becoming anemic and stops the neuropathy due to the deficiency.

1. The original poster DID say check with your doctor.

2. Anyone who would stop their supplements just from reading one thread here is a ding dong.

3. Doctors don't know much about supplements. I was really sick from supplements and THREE doctors shrugged their shoulders and said "I dunno. I dunno. Duhhh." A friend from this board said it was likely the large doses of iron I had been taking for a month of pure hell. I stopped the iron and hey! I wasn't vomiting my guts out every single morning and afternoon.

4. We ALL give each other advice on this board. That is the POINT of the board. I would guess that it is assumed that we are not doctors and that you take the advice as patients trying to help patients. Do we really all need to put disclaimers on our threads now? Is this what we have become as a society?

[new2celiac2k12]

I think most of what this is has led to frustration, and just because someone reads a post that gives advise on to stop taking this or that, the person not understanding this is the OP's opinion in their case, maybe not be everyone's situation, but to look for it, that's all.

One thing I do now is this: My family doctor knows absolutely nothing about celiac, the only thing he knows is it's diet related, they don't offer much, they then back off as they are not specialized or have any experience with Celiac, it was information in this board that had more of the concrete info, correct testing, correct diagnosis, and patient experiences, this board is where my gastroenterologist sent me for info.

I was looking into B Vitamins, and glad I found this, thanks for posting, it is something to be knowing about....

Last January I had a situation where my chiropractor told me I had a gal bladder problem.

My family doc took it personal when I said " chiropractor " and he felt that I did not take his consideration in not worrying about my gal bladder, after an ultra sound, it showed my GB to be enlarged, but they found nothing else to be worried about, so they said nothing found.

Five months later, I go back to my fam doc, and after finding info from this board with a Hida scan, I tell my fam doc he better make sure his original diagnosis was final, as I was recently layed-off from my job and my insurance was running out at the end of June, so he says what do you want to do, I said a Hida scan, he says why, I still have had issues with being gluten free and having stool issues, so he agree's to the Hida scan, and after the results, we find my gal bladder was only working 1 percent of the time!

So the moral of this story here, many of us deal with family doctors that don't know how to handle patients with Ceiac, they don't do the proper testing, and then we find the best possible info is on this board.

Sorry for my long winded post, but this board has been the best of in the most valuable information, where my family doc plays a game not believing I had a GB problem, and it was only 1 percent.....