B2

[Madison Granny]

Has anyone ever had a low B2 test?  My Rheumy's PA thinks I do.  I have read the symptoms and seem to have most of them.  Right now I am waiting on the test results.  I also had low B12 levels but on my last test they were high (over the normal range).  My Rheumy didn't pick up on this so I am still taking B12 shots.  We tried the B12 pills but it would not bring up my levels.  I was then told that i had Perinous Anemia and needed the shots.

[irish]

I don't know about the B2 level but I have to tell you that I have had issues for about 1 year or so and have had anemia much of this time. Hard to figure out plus colon issues but negative scopings. Finally doc did the blood work for B12 and folic acid and some other stuff. My B12 was in normal range but my doc emailed me and told me to start taking the oral B12 at 2000 micg a day. I have had some improvement in my colon/digestive issues, etc but my hemoglobin is down a little at 10.7.

The re Iading I did on the pernicious anemia and these B viltamin levels is really kind of complicated in a way. The intrinsic factor in the stomach is involved also and I have come to the conclusion that this could be a slow thing to sort out. We can also have malabsorption of b vitamins from issues related to autoimmune. I was tested for celiac but that was negative. Now going to check for fat content in stool (sorry) to see if my pancreas is putting out the enzymes they should. Just have to keep on working on this to see what the problem is. I hope you get this sorted out.Good luck. Irish

[BurntToast]

If you're having B12 injections, you can't take any notice of the blood test levels as they will always be high.  So that is why it's being ignored.  I've just started self-injecting for the loading doses for B12 and been told by the haematologist that they won't bother testing for B12 again as it won't tell us anything.

B2 deficiency is very rare.  That's basically all I know about it!

[Tharrell]

My neurologist told me to take two 250 mg B2 daily as it was most likely low. However she only tested B6 which came back low despite a healthy diet, so that's being supplemented as well. I'm taking both for acephalgic and regular migraines. I defenitely notice a difference if I don't take my B2 for a few days.

[bartolo]

Isolated vitamin B2 deficiency is very rare. You said that vitamin B6 is also low and that not all B vitamins have been tested. When you have a deficiency of one vitamin B, it's quite likely you are deficient in other vitamins from B complex. So, a reasonable approach would be to go with "vitamin B complex" supplements (prescription strength, not OTC) or to test for all B vitamins and supplement the deficient ones.

I assume you probably have a regular diet with variety of foods, so poor diet wouldn't be the cause of vit B deficiency? Diet itself is rarely a cause of vit B deficiency, anyway. The more likely causes are impaired absorption due to small intestinal inflammation or certain drugs (including alcohol) that inhibit absorption.

Symptoms of specific vitamins B may not be that specific that would allow a doctor to guess which exact vit B you are deficient in. Also, a lack of one vitamin B can make another vitamin B to work worse, etc, so this really needs to be tested before starting with long-term supplementation.

[Tharrell]

Actually my neurologist specificly said not to use the the B complex as it doesn't have enough b2 and b6 that I needed. My b12 was actually fine. Two years later, now, I was having malabsorbtion problems which is caused by pancreas insufficiency. The doctor tested the b6, b12 and folic acid and only the folic acid came back deficient. So I take 800 mg folic acid, 500mg b2 and one pill of b6. That's why the blood tests are essential and that is why, if deficient, a b complex is just not enough.

[jazzlover]

If you're having B12 injections, you can't take any notice of the blood test levels as they will always be high.  So that is why it's being ignored.  I've just started self-injecting for the loading doses for B12 and been told by the haematologist that they won't bother testing for B12 again as it won't tell us anything.

B2 deficiency is very rare.  That's basically all I know about it!

-
Thanks for the info. I take shots and mine has been high.

[Kendo]

I have lots of vitamin and mineral deficiencies so see a GI doc in three weeks. What tests did you have, Tharrell? I had the 72 hr fecal fat test (3 times!) in 2009 and had slightly above normal levels. Is there a better test these days? I take stomach acid supplements with all meals and OTC digestive enzymes for the three main meals.

I did a quick test of stopping these supports this weekend to see what happens. Turns out everything stopped moving and by 36 hours I had gained about 4 pant sizes in the waist and had abdominal pain. So I definitely do still need them! I spend almost $100 a month on digestive and vitamin supplements and have celiac disease.

I saw an idiot neurologist who said all my myasthenia gravis-like symptoms were made up or caused by my celiac disease. I've been gluten-free for 8 years and this malabsorption problem keeps getting worse. I think it is just a symptom of Sjogren's but don't have a real diagnosis of that either - not dry enough!
Kendo

[Tharrell]

Hi Kendo! I was having malabsorbtion and extreme weight loss for two years despite eating a lot. All my tests keep beeing normal. I did the gastric emptying study which was normal despite clear symptoms of gastroparesis. Then I was diagnosed with non tuberculosis mycobacterium kansasii lung infection and the pulmonologist and Infectious disease doctor blamed the weight loss on that. My gastro was not convinced and kept testing. He finally decided to test the stool.
I have done the fecal fat, qualitive test twice showing normal neutral fat, but fecal split test was increased indicating malnutrition. I did a stool culture to make sure the enteric flora was healthy and it was. He also ran the electrolytes and osmolality stool test, but lab couldn't do the testing due to the stool beeing too loose. Then he ran the pancreatic elastase fecal test and it came back moderate pancreatic insufficiency. He immidiately put me on Creon which is a pancreatic enzyme replacement therapy and ordered a endoscopic ultra sound. Thankfully my pancreas is structually completely healthy. My doctor is now at the stage of figuring out why I have the insufficiency. When I told my gp of this he only said : of course you get this! Meaning that if something is rare and I'm not following the book on all the problems that should be attached to this condition, then I would somehow manage to have it. He is the only doctor that get's me, he takes nothing for granted and immidiately orders tests if needed.
You say you already take enzyme replacement over the counter. That will scew your tests and come back normal.
Celiacs can indeed cause a slew of neurological problems, that doesn't mean the MG should not be treated, but if the celiacs is under better control it will help the neurological manifestations as well. Thankfully I don't have celiacs or crohns, just IBS. I do look pregnant after eating and get full of gas. Plus my food doesn't go fast enough. Like I said, my gastro isn't done yet, but I don't see him until October.
I hope this helps.

[bartolo]

Actually my neurologist specificly said not to use the the B complex as it doesn't have enough b2 and b6 that I needed. My b12 was actually fine. Two years later, now, I was having malabsorbtion problems which is caused by pancreas insufficiency. The doctor tested the b6, b12 and folic acid and only the folic acid came back deficient. So I take 800 mg folic acid, 500mg b2 and one pill of b6. That's why the blood tests are essential and that is why, if deficient, a b complex is just not enough.

I'm in the process of buying new glasses...I was reading your post and thinking I'm answering Madison Granny.

[Kendo]

Thanks, Tharrell! I had one of my fecal fat tests done with Viokase enzymes - 16 per day. They helped so much with the nausea from eating the 100 g of fat per day. My friends at work commented I had a bounce in my steps for the first time in years.

The enzymes worked well for the first 3 days of the 5 day test but then horrible stomach/belly pain started.  Luckily it stopped a few days afther I stopped the enzymes and the test. In Canada the top of normal range is 7g and I was 9 and later 11. With the enzymes it dropped to 7. The GI doc thought it might be a bile acid problem so gave me a drug for that. Also didn't work even though I took more than my hubby who used it for his Crohn's.

I'll have to stop the OTC enzymes before the testing and hopefully the extra fat will keep things rolling and stop the problems I had on my pre-test. Interesting that loose stools can't be used for some tests. I'm hoping they'll start with those tests for me. If I have to do the fecal fat collection again I will. But it does mean taking a day off work and staying home on a weekend - certainly not one with a music performance or houseguests!

My naturopath figured I had some kind of pancreatic insufficiency. I guess that does fit with Sjogren's causing decreased secretions. I think that explains my low stomach acid too.

The medication that I take for MG causes increased tears, spit, sweat and for some folks, more stomach acid. So it is hard to get docs to take my normal dryness issues with side effects of one disease masking symptoms of another!

Never dull in the world of the rare, unique and unusual!
Kendo