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Beware B Vitamin Toxicity!


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51 replies to this topic

#31 IrishHeart

 
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Posted 21 April 2012 - 11:23 AM

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. :lol: 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!
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


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#32 Chad Sines

 
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Posted 21 April 2012 - 10:33 PM

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.
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#33 Bubba's Mom

 
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Posted 22 April 2012 - 05:53 AM

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. :blink:

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! :o
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?
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#34 IrishHeart

 
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Posted 22 April 2012 - 05:57 AM

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.
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#35 Bubba's Mom

 
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Posted 22 April 2012 - 07:25 AM

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! :o 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? :(
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#36 IrishHeart

 
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Posted 22 April 2012 - 07:36 AM

It's scary that Dr.s would prescribe such high does and not do follow up! :o 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"....
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#37 Ninja

 
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Posted 22 April 2012 - 09:16 AM

It's scary that Dr.s would prescribe such high does and not do follow up! :o 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... :lol: but I see what you mean.
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#38 Bubba's Mom

 
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Posted 22 April 2012 - 04:23 PM

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

:lol: :lol: :lol:
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#39 ravenwoodglass

 
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Posted 23 April 2012 - 02:37 AM

I can imagine you'd be over dosed with taking a B complex AND large doses of the separate B's! :o
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.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#40 Bubba's Mom

 
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Posted 23 April 2012 - 06:14 AM

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.
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#41 IrishHeart

 
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Posted 23 April 2012 - 06:54 AM

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." :blink:

See what I mean?

Too many cooks. :blink:

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.
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#42 quincy

 
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Posted 23 April 2012 - 08:53 AM

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." :blink:

See what I mean?

Too many cooks. :blink:

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.
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#43 frieze

 
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Posted 24 April 2012 - 07:30 AM

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.
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#44 Chad Sines

 
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Posted 24 April 2012 - 07:38 AM

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.
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#45 IrishHeart

 
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Posted 24 April 2012 - 07:49 AM

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 :lol: ....thank you for echoing what I have been trying to get across in this thread all along! :)

( my work here is finished... :lol: :lol: time for lunch....)
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif





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