Hmmm, B-12 Deficiency Doesn't Always Show Up On Labs...

[sue1234]

I thought this was an interesting study, and possibly pertinent to someone here. I already looked up on the online lab place that I usually purchase lab tests when doctors don't check things, and I'm going to spend the $60 to test for the antibodies. I was questionably on B-12 injections for about 10 years, and not now. So, inquiring minds want to know!

http://www.ncbi.nlm.nih.gov/pubmed/20587489

Apparently all your markers can look okay, but you still be deficient! Kind of scary. For this lady, what if her doctor would have never looked deeper at her issue?!

[L4UR3N]

I just saw this the other day! Someone put clever (but somewhat intrusive/redundant) inserts in to Wikipedia under the POTS definition. I check back every so often since people are always adding things. Don't think it will stay there for very long just b/c of the way they worded it, ....but it is an interesting idea anyway. I can't tell you how many times I wished I had beriberi or some other fixable nutritional deficiency!!!

Thanks for this article

[sue1234]

Rissy, the way I look at it, we may have a nutritional deficiency that doctors just haven't figured out yet. Each nutrient affects soooo many biochemical reactions and are needed for so many enzymatic pathways. I seriously keep going in circles and coming back to gluten sensitivity.

[L4UR3N]

Very true. I do believe there is a gluten connection for many people, and some research does support this:

http://jnnp.bmj.com/content/76/4/579.full

http://www.neurology.org/content/60/10/1581.abstract?ijkey=c3cccde5b4078a06154ca83818b68d54a9ed9255&keytype2=tf_ipsecsha

Unfortunately from the results of the study, it does not appear to respond to a gluten free diet. There really needs to be additional studies on this topic...

[Dizzysillyak]

Thanks .. Interesting info.

I could be wrong but instead of getting tested for intrinsic factor antibodies, why not try

adenosylcobalamin ? Or methyl b12 with intrinsic factor ?

Not that going gf has cured me, but i noticed that in one of the studies cited, 2 of the patients admitted

to cheating on the gf diet. A gluten antibody test via stool should pick this up and be more

reliable data than a confession .. Those who didn't think they were cheating may not have

been gf either.

Stool testing is said to be more reliable / sensitive than the blood tests.

Forgot to say that I consider myself gf but I have been eating nuts and seeds from the bins at my hfs since I started this diet in 2005. I was doing well so I thought I was getting away with any cross contamination that may have occured. BUT, more than likely I was being glutenned .. Duh ... I had

low level antibodies but never figured it out. Sometimes I just don't know where my brain is ...

Fwiw my doctor keeps telling me that just cause my nutrient tests come back normal, that doesn't

mean it's making it into the cells.

[sue1234]

Rissy, thanks for the article links. That is some of the same stuff I keep running into, also!

Dizzy, I want the test results because I want to know if I have the antibodies. I have all kinds of things that have pointed to pernicious anemia, such as premature graying and gastritis with every scope done. I was taking B-12 injections, but quit 6 months ago to see if it made any difference. I just am curious.

[juliegee]

Rissy, the way I look at it, we may have a nutritional deficiency that doctors just haven't figured out yet. Each nutrient affects soooo many biochemical reactions and are needed for so many enzymatic pathways. I seriously keep going in circles and coming back to gluten sensitivity.

Really? For you or all of us? Are you gluten-free, Sue? BTW, I think you are on to something with your B-12 deficiency idea. An inability to absorb B vitamins properly may very well be behind dysautonomia. I say this based on the fact that so many of us have abnormal RBC's- too few, too many, misshapen, too large, etc.

[issie]

Okay, now I'm going to throw another thing into this picture. B12 is a potent NO (nitric oxide) scavenger. If you have low bp's and your NO levels are too high - the B12 will be beneficial. But, for us with HyperPOTS and low NO levels B12 will create really bad reactions. (At least that was my experience with the experiment that I did.) Maybe, the key is the levels of NO - not B12. The B12 could have lowered her levels of NO and that's what helped. Since the B's are water soluable - seems like levels would fluctuate with food sources and supplement use. Those levels would always flutuate. The test would have to determine if the folate is out of balance too - because one vitamin can mask the levels of the other. Our bodies can produce vitamins on it's own - but not minerals. Just something else to think about. Those doing the B12 shots - did they help you or hurt you? Did they give you energy and help your symptoms or did you go downhill with them? Are you HyperPOTS or the more typical with the low bp's?

[sue1234]

MM, of course I would not say we all have nutrient deficiencies. I'm thinking there are alot here that have so many odd symptoms that could relate to deficiencies. There are so many things we(again, not everyone) just say that it is due to POTS, which some are. BUT, there could be things that happen as a co-condition with POTS, and might be due to something lacking.

Issie, I haven't noticed any difference since I quit the B-12 injections. I have to say that when I used to take them, I would feel really tired for a day or two afterwards. I have no clue why.

For instance, I found this chart of things that a group of researchers found. It shows a list of all the neurological findings they've found in their patients that ultimately had "gluten sensitivity" due to antibody levels. If you note at the bottom of the list, 4 out of 4 of their "Stiff Person Syndrome" people had gluten antibodies! That is exactly what ErickainOrlando had. So, I've been reading alot of celiac's stories on symptoms and alot of research related to gluten and the different ways celiac and/or gluten sensitivity can affect the absorption of nutrients; without these nutrients, then the sequelae of health issues that unfold. It is so interesting. I'll link the article because the link shows in table format and easier to read:

http://jnnp.bmj.com/content/72/5/560/T2.expansion.html

J Neurol Neurosurg Psychiatry2002;72:560-563 doi:10.1136/jnnp.72.5.560

• Gluten sensitivity
  
• Editorial
  

Gluten sensitivity as a neurological illness

Table 2

Neurology of gluten sensitivity

Patients seen in the gluten sensitivity/neurology clinic at the Royal Hallamshire Hospital, Sheffield over the past 8 years 131 Ataxia (four patients with myoclonus) 56 Sensorimotor axonal neuropathy 26 Mononeuropathy multiplex 15 Motor neuropathy (three MND- like picture on NCS/EMG) 10 Small fibre neuropathy 4 Mixed demyelinating/axonal neuropathy 2 Myopathies 8 Abnormal white matter on MRI (with episodic headache) 19 Stiff-man syndrome 4 Neuromyotonia 1

[sue1234]

BTW, I woul love to still be in touch with Ericka to let her know about this study, so she could have gluten antibody testing done. It would be interesting.

[Dizzysillyak]

Hmm, maybe I should try adb12 and/or methyl b12 again .. I was taking both of these but hadto stop because after a few months

they always caused a state of complete and total insomnia and that wired but tired feeling.

Also, I didn't have any relief from my cfs fatigue (heavy body feeling) or dysautonomia either but I felt better overall. I'm not sure what form to get tho since The sublinguals gave me some intense side effects.

fwiw .. my labs after being on the sublinguals for a few months, showed that my b12 was either at 1600 or over. Back in 2006, when i was doing injections occassionally but never regularly, it was in the 200 range. Then a year later, it came up to

500 ?. Then a year or so later while on metagenics vessell care (b12 + intrinsic factor) it came up to 700 ? ... So the sublinguals were the most effective for me.

I've met others who.ve also said that their b12 scores were much higher from taking sublinguals too.

Btw. I was told once that my rbc's have an irregular shape too. I googled this today and found multiple

possibilities ..

Tc .. D

[Csmith3]

For what it's worth, I have B12 deficiency and my POTS symptoms were noticeably worse when my B12 levels were low. I had very little energy and was greying out a lot when sat down, let alone on standing. I tried changing the POTS and cardiac drugs to no avail. It was only when the neurological symptoms appeared (arm and feet went numb) that I was tested and the B12 problem became apparent. The body carries a 3 - 5 year spare supply of B12 and my symptoms gradually got worse for 18 months, presumably after a similar amount of time when I didn't notice anything.

I had all the tests to find out why I was B12 deficient but nothing showed up which was considered very unusual. The antibody test was fine (I suspect the downhill progression if this is positive would be faster), I wasn't anaemic, coeliac/gluten tests were all OK, didn't have any other deficiencies, I am not vegan etc.

My B12 level dropped to 160. Within about a month of taking B12 (50 micrograms once a day; the same dose as you can buy from the pharmacy without a prescription) reversed the B12 deficiency. It took another 2 -3 months to feel "normal" and for my heart rate to settle down again.

My view with these things is that at some point, something else will go wrong which will explain why I got the B12 deficiency!

[juliegee]

Sue- I actually wasn't questioning the B-12 irregularities. I agree that that may be behind/correlated with most dysautonomias. I was questioning the idea that an autoimmune response to GLUTEN was behind dysautonomia in general.. I know it may be for some, but for all? Or were you just referring to yourself? And, are you gluten-free? I recently tried and miserably failed

[sue1234]

We do seem to have alot of autoimmune issues. But no, I'm not suggesting everyone. I'm speaking out loud when I say "we", and am probably thinking of the ones here, like me, that don't know why their life went from normal to POTS in no time flat!

I have been "low gluten" as I try and get the energy to go gluten-free. I've been reading and reading to make sure I understand all I need to know. I can't stand up and cook very much, so it's a matter of getting prepared to have my husband help cook larger servings on Sundays of different things and then freeze portion sizes.

Thinking about odd nutrients, all of my B vitamins besides B-12 that have been tested come back HIGH. The one that were tested were B1 and B6, and biotin. I don't really know what that means, but I keep thinking they are not being utilized. And, I do not take any supplements. My vitamin A was tested and it was very normal, yet I'm blind as a bat in the dark! I need to fill in my post from a few weeks ago on my lab results.

[juliegee]

YES- you are not alone with the high B counts. I have read others that have that as well. I truly believe that dyregulation or dysfunction of B vitamin absorption, utilization, etc. is behind dysautonomia. My numbers always come back screwy showing SEVERE deficiency, but when the specfic serum level is tested- it is NORMAL.

Like many, I use CFS/ME interchangeably with dysautonomia. In fact, oddities with B Vitamin levels are listed as criteria/symptomology for CFS. You are most definitely on to something.

I am low-gluten too- just naturally. I was VERY shocked by my response to gluten-free. It is very telling. Not sure what it is saying though...

Julie

[sue1234]

And, another example of what I mean when I say that we might have co-conditions with POTS. This talks about celiac disease and autonomic issues with the upper gut.

http://www.ncbi.nlm.nih.gov/pubmed/9466129?dopt=Abstract

"up to 75% of coeliac patients displayed gastrointestinal motility alterations. Delayed gastric emptying was documented in about 50% of patients and was correlated with manometric post-prandial hypomotility."

The more I read, the more intertwined everything becomes. Remember I'm the one with blue urine(when it sits for 24 hours!)? I've come across a few articles linking the "disease" that causes blue urine, Hartnup's disease, with celiac disease! Hartnup's has something to do with tryptophan not being absorbed correctly in the gut, and then getting coverted in the gut to indoles that get into the urine, and give it the color. So, I keep seeing things connected to absorption in the gut. It could be celiac or gluten related, or it could be something that hasn't been discovered yet. I don't know, but it sure keeps me busy reading.

[sue1234]

Julie, I did see you talk about your awful reaction to going gluten-free. It sure is a mystery! So, are you going to try it again?

[issie]

Rice is one food that is really high in the B vitamins.

[sue1234]

I don't eat alot of rice. Even though we grow and sell the brown rice, my stomach doesn't handle heavy fiber, so I don't eat it very much. I am trying to incorporate more brown rice into my diet, so I can get some fiber, but it is a slow process. And, I don't eat hardly any white rice due to to my glucose issues.

[L4UR3N]

One interesting thing to keep in mind:

If someone is hypovolemic, results of blood work may not reflect true and accurate levels due to hemoconcentration. Levels may appear higher than they actually are, and a normal value may actually reflect a deficiency.

[juliegee]

Good point, Rissy. We've always taken hypovolemia into consideration when explaining polycythemia; BUT if I understand correctly, it could also mask a normal B-12 serum test...

At some point, I will try gluten-free again, Sue. You are sooo smart and sooo right to do oodles amount of research beforehand as there are so many ins and outs to it. I do eat brown rice, Issie! I try to eat NO white foods because of low glucose issues as well, but with a slow GI tract, I have to overcook the the brown stuff to make it palatable.

[sue1234]

Good point, Rissy! I have to keep reminding myself of that.

[looneymom]

Another interesting post on B-12.

Rachel

[Clash0501]

I don't have a lot of knowledge yet about POTs, I'm new to the forum and to POTs. But my son was dx'ed with Crohn's Disease a few years ago. Due to the inflammation and scarring that occurs in the GI tract with Crohn's Disease, a lot of Crohnies are vitamin deficient in several vitamins. Since malabsorption is an issue and vitamins are absorbed in certain parts of the GI tract deficiency occurs. The most important with CD are Vitamin D, B, folic acid, zinc and some say magnesium.

In researching my son's illness, I found it interesting that gastritis can cause pernicious anemia and that the intrinsic factor needs to be tested because the deficiency can be masked. I have had two endoscopies 4 years apart the first was h. pylori positive and since I was having symptoms it was treated, my symptoms went away. The second was this past November and I had unfortunately been on Nexium for a month when I had the test. Visually I looked normal but the biopsy showed chronic inflammation/chronic gastritis that was h. pylori negative. I've questioned whether I could have pernicious anemia but the docs say that my visual would have been a mess for that to have occurred, I'm not sure I agree since I had been taking the nexium for a month.

My B-12 level are low normal and I am now supplementing over the counter. My Vitamin D level was 14 and I was px'ed Vitamin D2, 50,000 units once per week. Through my son's illness and my research I've learned that D3 with co-factors is better absorbed especially when taken with fats like cottage cheese, olive oil etc. So once I finish this px I think I'm going to switch to my son's regimen.