Was said to post Vit D here so here goes..
Today's MS support group meeting, one guy's taking 10,000 i.u./day = level 30
I take 2000i.u./day & my level's holding 90's. Everyone's different, you have to get tested & not go by dose. 8000iu's had me over 120.
I also told all to try 500mcg's B12 cause I heard many say they've been tired lately. The guy taking 10,000iu's of D is starting B12 shots next week.

Hello, just found this forum while researching.
I got my blood test results the other day.
My B12 levels were at 100.
Now that I'm researching, I'm very concerned about it. Started taking 2mg of B12 two days ago.
My doctor didn't recommend a brand of supplement, tell me how much to take, or suggest injections, nothing. My iron is also very low.
I'm experiencing pretty much every symptom associated with b12 deficiency, and have been for at least a year. Been vegetarian for 8 years, because of moral opinions and a health condition.

How long will it take to stop the symptoms? My parathesia in my legs is a little painful. I thought it was my multiple lipomas sitting on the nerve, but they aren't, so I assume it's a symptom. Kind of worried that my levels have been low for a long time, but is it possible that something like an infection could have lowered them a lot as well? I had pneumonia from june until the middle of july this year, and since then the chronic fatigue, tingling, spasms and twitches have all gotten much, much worse.

Thanks if you read this.

I think you should be more aggressive and use 5mg orally daily on an empty stomach. Brands that people have used here that work include, Jarrow's and Puritan's Pride.

iherb.com
Puritans pride
Swanson's
Vitacost

All have a form of methylcobalamin and you can choose what you want. I'd stick with the active methyl type as it works better.

Expect this to take a few months, depending on how long you were low.
The iron questions should be directed to your doctor.
Dosing and how long to take it depends on how low you are.
Taking too much is problematic and too little won't help you much.

If you are anemic, expect to feel fatigued at first when you start the B12. In anemic patients, there may be a short time when your potassium gets low as new red blood cells are made.
Eating potassium rich foods can help during this time.

A short update:

I'm finally getting a blood test on Monday the 17th (for B-12, B-6 and many other usual things for an annual exam), and haven't taken any of my vitamins (or fish oil) since Saturday. So it has been 6 days since I have taken my usual vitamins and supplements.

Before Saturday, I was really feeling great -- better than I have in a LONG time -- mainly, i think, because of the B-12 I have been taking since mid-August. (My B-12 level in mid-August was 398).

Now, 6 days after discontinuing my vitamins in preparation for the blood test, my depression is starting to come back. I feel it on a very organic level -- the way I perceive things, my ability to cope with stress, my general cognitive abilities -- are all taking a nosedive. I know that I can hang in there a few days until my test, but wow -- I didn't think that stopping my vitamins, especially the B-12 and high EPA fish oil, would impact me in such a specific way in such a short amount of time!

I find this very interesting. In addition to the blood tests, I will be doing a mail-in urine test for Pyroluria. Frankly I don't think that I have Pyroluria, but I strongly suspect that my 15-year-old daughter does. She will be doing the urine test in about two weeks. She has an anxiety disorder and when I read about Pyroluria, it seemed to describe what she was going through. Pyruloria is a condition where the body doesn't properly utilize B-6 or zinc. Interestingly, she tells me that if she doesn't take her B-complex vitamins, she doesn't feel as good. She will also get a blood test for B-12 and B-6. She had some other blood tests a few months ago and they were all normal (including the thyroid panel).

Anyway, I can't wait to get back the results of my B-12 test and see how my oral supplementation has improved my level, or not. Feeling foggy-headed and mentally dull sure isn't any fun.

By the way, do you guys know whether B-12 helps the body heal better or faster? I'm getting some oral surgery at the end of the month (gum grafting) and I wonder how the B vitamins affect the speed or efficiency of healing.

We'll all be waiting for your results. ;)

I have a question about B-12 and meds for acid reflux.

I know that PPI drugs like Prilosec interfere with B-12 absorption. So do acid reducers, like Zantac. Since I've found this out, I try to avoid taking anything but some Tums from time to time.

Anyway, in this past week my acid reflux has suddenly gotten really bad, out of the blue. Tonight I just couldn't stand it anymore and I had to take a Zantac. It really helped. I have spent the last several days having horrible reflux, belching, a lot of gas, and a tender bloated belly.

At what point do acid reducers like Zantac interfere with B-12? If I take my B-12 in the morning, and then wind up taking a Zantac 4 or more hours later, is that OK?

I'm very concerned about screwing up the B-12 level I have worked so hard to build up in the past few months.

As to the reason for the reflux -- I'm really not sure. In the past, antibiotics have caused it, and after a while it died down. But lately I have noticed that my lactose intolerance has gotten worse and my reflux has returned. I haven't been on any antibiotics for the past year. I'm avoiding most dairy and taking a Lactaid pill with any meal or snack that has any dairy in it. Even yogurt gives me a problem (it didn't used to).It has been rough. I tried drinking Kefir a couple of weeks ago (and took a Lactaid pill just in case) and boy, that did NOT agree with me. Terrible gas, really disgusting. I have read that Kefir is a wonderful pro-biotic, but maybe it's just not for me. I have no interest in trying to ferment my own, BTW.

My recent blood test included Celiac. Sometimes I wonder if these symptoms aren't part of something else. I'm tempted to see a naturopath to try to straighten out my digestion. Last year I had a colonoscopy (welcome to age 50, LOL) and it was 100% normal. The weird thing about the reflux is that it seems to come and go. For months things are perfectly normal, then all of a sudden it just gets bad for a while.

I appreciate your advice on B-12 and acid reducers, or any other insight you can offer.

This is the skinny on acid blockers:

1) they reduce acid in the stomach by either of two ways... by blocking the proton pump (Prilosec/Prevacid etc) or by blocking the H2 receptor (Zantac/Pepcid etc).

2) Intrinsic factor needs acid to work and bind B12 from food.
So constant use of these acid blockers, or a natural decline in acid (which happens when we age) called achlorhydria... decreases the intrinsic factor ability. The normal amount in food daily of B12 is about 2micrograms or so, and intrinsic factor is necessary for such small amounts.

3) Also acid blocking drugs impair your ability to digest protein.
The protein normally is broken up by acid in the stomach. When this fails, due to acid being not present, the protein moves on into the intestines and colon and FERMENTS...creating gas, bloating and diarrhea. Your dairy problem may be this, and not lactose intolerance.

You can still take B12 in a massive dose 5mg a day on an empty stomach. You do not need intrinsic factor for these high doses, since at 5mg some will be absorbed PASSIVELY in the small intestine. The presence of food, will block this type of absorption.

You can still take your B12, but if you continue with acid blocking drugs, and you will continue with gas, bloating and all the rest of the GI disturbances from undigested protein in your food.

As far as the Kefir goes, try a small bit daily in the beginning. 1-2 ounces and you may get the benefit of the probiotics and not have the gas from the dairy protein that is in it. Some people find the whole fat version better in this regard. My local Kroger's only carries the low fat types. As you build up the new probiotics in the bowel, the gas may improve slowly so you can consume more. I tend to have 4 ounces-6ounces once a day. I have it as a dessert after dinner, or as a snack around 11am if I get up early and have early breakfast. I was having massive gas, bloating and nausea this summer and fall, and within 3 days of Kefir it was all gone! A quart is lasting me around 5-6 days at the rate I am drinking it now. But it is up to you.

Acid blocking drugs really upset the body in serious ways. It may take some time to get your bowel back to normal.

Mrs. D, thank you for all your knowledge!

I suppose if I take a Zantac once in a while, or only for a few straight days, it will be OK as long as I keep on top of taking the B-12 in the morning.

Approx. 5 years ago I was on a PPI drug for several months. My doctor never mentioned the B-12 thing to me. That might have been when my B-12 problem began. I understand it so much better now....I was on Augmentin for a bronchial and sinus infection, and afterward developed horrible reflux. Tested negative for H. Pylori. Went on Aciphex. Had an upper endoscopy, which was normal. Now looking back I understand that the antibiotic probably killed a bunch of of the good bacteria (despite me eating yogurt), and that is probably what caused the reflux in the first place. These days I refuse to take Augmentin unless it's absolutely necessary.

As a side note....I'd suffered with a lot of sinus infections and coughs. To make a long story short, years later I found out that I had a benign tumor in my sinuses! That was the cause of me getting so sick all the time (not allowing proper sinus drainage). Since the tumor was removed, I've been wonderfully normal....nowadays if I catch a cold, I recover in just a few days like a normal person and rarely develop a cough anymore!

I haven't seen full-fat kefir in any stores yet. Maybe my local health food store would have it. You reminded me that with lactose intolerance, lower fat dairy products make it worse. Which is why I don't have too much of a problem when I eat high fat premium ice cream!

I have been wondering whether my problem lately deals with milk protein versus lactose. The thing is, it seems that gastro doctors aren't well equipped to figure this out. If it can't be fixed with pharmceuticals or surgery, they seem to be clueless.

I'll seek out a higher fat kefir and try drinking it in smaller quantities. Everything I read about kefir says that it's very good for digestive problems and that it can actually cure lactose intolerance (or make it a lot better). Not really sure about the "curing" part, since the reason a person becomes intolerant is the lack of lactase enzyme. Maybe somehow the good bacteria restore that ability to produce the enzyme???

I believe that the whole milk Kefir, is also lactose free (99%).
Their website at Lifeway gives lots of facts and I found it interesting.

My low fat type is so thick and rich, I can't imagine what the whole milk fat one would be like! ;)

If you can get the organism balance in your GI tract more balanced you may not be dairy intolerant anymore. But there are people who are casein intolerant, but then ice cream would bother you!

Cow's milk contains casein and this can be allergenic in its own right. Lactose intolerance means you may have lost the enzyme that breaks down lactose. Lactose would then be fermented causing gas, bloating and diarrhea. So it can be confusing since both problems give similar symptoms.

zeeclass6,
So Delicious has a cultured coconut milk drink and a cultured "yogurt" made from coconut milk. The drink has about 10 probiotics, as does kefir. I just learned of them a few days ago, and am going to town tomorrow or Saturday to pick some up. So Delicious' website is turtlemountain.com I think. I am on an elimination diet, and am really missing my daily yogurt:(, so I'm looking forward to the coconut substitute.

Found Jarrow Formulas B-12 in Colorado Springs
 

I found and bought some Jarrow Methyl B-12 at Natural Grocer/Vitamin Cottage in the Springs. They're across the street from Whole Foods, next to Petsmart. I think they had 1000mcg and 5000mcg. (An alternative to ordering online, if you're in the area....)

I just joined this community and saw the thread on B12. I asked my doctor to test because I am on high levels of Metformin and I had read that Metformin can deplete the B12 levels in ones body. We tested and found out I was low. I started taking cyancobalamin and then changed over to Methylcobalimin. I then switched to Metanx a prescription form which has Methylcobalimin, Folic Acid and B6 which I take 2 times a day. I did not know I should take it on an empty stomach so will make that change starting tonight. My question is how long after I take the Metanx should I wait before eating?
Thanks for your reply.

I'd wait an hour. For the sublingual types, you can chew those up and swallow with water...and I think it gets into the intestine faster. But a big solid tablet takes more time to dissolve.

The Metanx insert is very vague.
www.metanx.com/media/Metanx_PackageInsert.pdf

Does not elaborate as to the coating...on the tablet. Is it enteric coated to protect the P5P? If so it will take a long time to dissolve. There also are no directions regarding food.
Food impairs B12 absorption, because it relies on PASSIVE movement in the intestine.
This insert seems to focus on the methylfolate only.

So while Metanx appears to be a positive movement forward in treating deficiency...the product itself is promoted without regard to the needs of each ingredient.

This is a "medical food" and as such it does not have to conform to the FDA rules on drug pharmacokinetics, --meaning absorption, fate and distribution. The reason the insert focuses on methylfolate is that the FDA requires RX for folate 1 mg and over. The OTC B12 and P5P are therefore not addressed at all IMO.

Take a look at all the ingredients on that PDF... has to be the longest I've ever seen for an oral dosage form.

**

Thanks for the information. I haven't read teh package insert because I have never seen it. Also I don't know if Metanx is enteric coated or not, but you do bring up some very good points.

THANK YOU for telling me this!!! I never would have thought to look for a product like that. I just went to their website and saw that their products are carried in the 3 major stores in my area. So tomorrow I'm going to try some yogurt made from coconut milk! It will be interesting to see whether I've been reacting to the critters in the kefir, or whether the milk/lactose/casein was the problem. I used to be able to eat yogurt and not take a lactaid pill and have no problem. But not anymore; now it gives me a problem, even with a lactaid pill. I would rather get the probiotics from a food than from a supplment, if possible.

Alas, my local whole foods did not have the So Delicious cultured coconut milk drink. They just had the regular, non-probiotic-fortified coconut milk.

I have one more suggestion...

There is another digestive issue, that causes gas, bloating and diarrhea... it is fructose intolerance.

Most of the yogurts have sugars in them. Even the Kefir flavored ones. One in 3 people have fructose intolerance and will react to the sugars in the foods you eat. It can be very difficult to nail this. If some sugar is consumed with food, it can blunt the reaction. But when taken ALONE, that is when a reaction is more likely to happen and be identified.

http://en.wikipedia.org/wiki/Fructose_malabsorption

I would expect the coconut milk yogurt to be difficult for fructose intolerant people. One hint, that can be historical is an intolerance to apples, apple juice and pears. In fact had I known this years ago, I would have been more comfortable myself. I cannot eat pears... never have been able to tolerate apple juices either! I discovered this for myself a few years ago. Since then I've avoided my triggers and have been much better.

For yogurt I use Carbmaster, from Kroger's, which has only 4 grams of sugar. I use the unflavored Kefir.

Hi all.

Just came back from the store. They had coconut milk, all the other kinds of non-dairy milk and then I spotted the LIfeway Kefir, on sale for $2.79.

Grabbed it.

That should last me 4 or 5 days.

All those good probiotics. Not that I need any, I'm doing just fine, I just like to have GOOD stuff in my body.

Because once you are used to eating sprouts and vitamixing your stuff (made a coffee cake yesterday using my vitamix) not for me, I had to go visit someone, well, I like to try all good stuff now.

Each and every day I discover something new and wonderful for my body, my digestive system, my blood and my arteries.

Turning 64 on November 4th. Don't care how long it took me to get there but I'm getting there.

And I go to the dentist every 6 months to get a cleaning and so far, no diabetes in my gums or mouth. The dental hygienist said "Melody, you have NO idea what we see in gums with people who are diabetic"

Never knew this.

Never knew lots of things.

Learning.

Will continue to learn until I drop

lol

Melody

Lucky you Melody..... At Kroger's here the unflavored Kefir, is
$3.89 a quart, and the organic is a dollar more.

It is certainly worth it to me however.

Make sure you shake well ...as it gets thick on the bottom.
Also when I pour out the last bit, I put in some water in the bottle, and
rinse and consume that. I also rinse out my cup and drink that. So as not to waste any!

Hope you enjoy them and can tolerate them. I drank some of the unflavored and the chocolate cultured drink. Compared to the Lifeway Kefir, the unflavored So Delicious was a bit less tart, but enjoyable. The chocolate was very lumpy, but tasted as I expected. I called the company to make sure it was ok with the lumps, and they said yes, it was normal for the chocolate to be lumpy, because of the cocoa powder.

What a bummer. It's 50 miles one way from my house to any of the natural/organic/real food grocery stores, but at least I have access.

Maybe you can request that your local WF carry it? Do they carry other So Delicious items? Don't forget to check your regular grocery stores, too.

Forgot to add, I also found some cultured almond milk "yogurt".

I only checked one store. I'll try some others.

I had a look at some other "milks." None were fortified with probiotics, except the dairy-based ones.

P.S. I've never had much improvement with probiotic supplementation, but I'm willing to keep trying. The kefir didn't process well through my system. I think anything dairy-based is trouble for me.

I wonder, Can I put, let's say, a half cup of this kefir, a teaspoon of my cocoa powder, and a tiny dash of wheatgrass powder and make myself a power smoothie.

My sugar was 87 this morning and 133 post prandial so I'm good in that department. I wonder what making a concoction like that would be like for my body.

Good Lord, I'm turning into Jack Lalanne!!!

lol

And let me exclaim to the world that I thing TEMPEH is the best thing since the invention of chocolate mousse. Oh my god, the meals one can make with this little rectangle thing.

I cut it into cubes and freeze little portions and the protein and because it's NOT Tofu, it doesn't have any estrogen effects on the body like too much Tofu would have because it's a fermented product.

See what I've learned from my various online buddies. lol

Mel

Yes, you can add to it, Melody. I've tried cinnamon in the beginning, when I was so sick. After about 3 days I got used to the plain, and stopped adding it.

No reason you can't jazz it up... might lose some in the vitamix container, but that would be all. You could add fruit etc, flax oil, or lecithin granules, or cocoa. The cocoa might lump up unless you mix it in something to suspend it first. Fine powders can clump up, but my cinnamon didn't. (people typically don't use much cinnamon however).

If I do this later, I'll make a video and we shall see my new concoctions.

Every morning now I make Alan a fresh orange wheatgrass smoothie and he doesn't taste the wheatgrass. I just toss in a whole orange (unpeeled of course), add a tiny bit of wheatgrass (and sometimes I add some pineapple) and in less than 60 seconds he has all the nutrition of that drink.

No more bottled or canned juices in this house. Not since I got the Vitamix. His skin is even better for it. All that C and whatever else is in fresh fruit.

I'm not a smoothie person but I do want to give this kefir stuff a try.

And my ice cream at night is to die for. If I knew I could make peanut butter chocoate banana ice cream at 7:30 at night every night and get up and my blood sugar is 87, well, I would have done this YEARS ago.

Best ice cream I could ever make. All those tastes combining.

Heaven!!! lol

Wow, Im just seeing this now as I browse(for some reason Im not getting email alerts). I only take 100 mg of B6 a day. Mrs D, should I do without? I don't know my levels..still waiting to get them back. BTW, can neurontin actually CAUSE neuropathy?

Thanks for the concern Melody!

Kate

I sent you a PM. But I'd cut back on the B6 to 50mg a day or less. You can take your 100mg to use up, just take it once or twice a week instead of every day. If you don't have B2 you cannot convert the B6 (pyridoxine) to active pyridoxal and it may build up in your system over time.

Many people who come here suspecting B6 overuse, just stop it completely for 2 weeks or a month, and see if there is a difference.

Dear Mrs. D and everyone,

I got the results of my blood tests and I wanted to share the with you. I was off all of my vitamins and minerals for 10 days before I took the blood test.

First of all, I want to mention that I had done a mail-order urine test on my own for Pyroluria (from BioCenter Lab in Kansas) and the result came back positive, much to my surprise! My level was 30. The scale goes from 1 to 20. I've read that anything above 10 should be treated...20 is definitely considered abnormal.....so I will have to look into this!!!

Blood test results (from my regular local lab):

My B-6 level was 14 on a scale of 2.1 to 21.7. You'd think that with Pyrolurria my B-6 level would be lower, so I'm very confused about that.

My B-12 level went from 398 (in August) to 787 (in mid-October). Yea, it has gone up! Although I believe it should be higher, closer to 1,000, correct? (In 2004, it was 1600). I plan to continue taking the Jarrow Methyl B-12 (5,000 mg) daily. My doctor did not think I needed shots, and she also did not think that I had lost the intrinsic factor or that I was at risk for pernicious anemia. She didn't want to do any further testing in this realm. She just told me to keep taking the B-12 but couldn't offer any advice about dosing.

Serum Folates: 17.6 (scale normal is >5.4)

Vitamin D: 40 (scale 30 to 100)

Methylmalonic Acid: 108 (scale 87 to 318)

Homocysteine, Serum: 6.2 (scale 5.4 to 11.9)


The Celiac panel came back normal, except that my IGA Serum was low at 67 (scale 81 to 463). My doctor said that this might make me more susceptible to intestinal parasites (like Giardia) but that there was nothing that I could do about it....except perhaps try to boost my good intestinal flora with pro-biotics. I have not researched yet what it means to have a low serum IGA level, but I plan to.

My CBC tests were all within range, but on the low side. MCV was 84 (scale 80 to 100). MCH was 27.8 (scale 27 to 33). My doctor said it was fine.

My TSH was 1.26, which is a good number for me. (range is .40 to 4.50) I've had Hashimoto's Thyroiditis for 15 years.

My Free T4 was 1.9 (scale 0.8 to 2.7).

My Calcium was low, (8.3 on a scale of 8.6 to 10.2) which was weird because my calcium has always been well within range. Recently, as I have written on this message board, my lactose intolerance has gotten worse so I have been avoiding extra dairy. I will make more of an effort to take extra calcium pills. (I know that taking them with magnesium helps absorption).

I'm 51, at the brink of menopause, so I know that it's really important to get that calcium level up. Also, recently I found a really good latose intolerance supplement called LCS made by TheraMedix. I take their enhanced Bromeline supplement (RPR) sometimes. Anyway, the LCS has as much lactase as a Lactaid Ultra, plus it has all sorts of digestive enzymes. Since I started taking it with dairy, I don't have any symptoms of lactose intolerance.

I have more numbers, but I won't go into detail with them. Everything else was totally normal. Lipids were terrific, but then again cholesterol has never been a problem for me.

So...what do you guys think? Should I keep taking the 5,000 mg B-12 daily or do I need more? Should I take that much daily indefinitely, or should I do that for a few more months, get re-tested, and see how much I need to take for "maintenance"?

Looking at these numbers, is there anything else that jumps out at you that my doctor is missing or wrong about?

I'm seeing another doctor as a second opinion next month. This other doctor is an MD but is more into alternative medicine, "Reverse T3," bio-identical hormones, treats thyroid disorders on a deeper level than just checking the TSH and T4. I saw her for a free 15 min consult today and she was impressed that I understood how to take B-12 properly and that Methyl was better for me. I owe that to you guys!!!!!!!

Thank you for your help. This message board has been invaluable to me.

Sounds good to me.

I'd stay on the 5mg methylB12 for a while yet. My normal B12 is 850 or so without supplements. I think you should beef up your liver storage and help get that B12 into the CSF with higher levels than you have. Another 3 months may do it, and if you pass 1000 you can coast then with say 5mg twice a week or 1mg daily if you want.

Pyroluria is treated with zinc and B6. It can also swing back and forth with "stress" being a trigger factor.
I seem to recall jcc over at gluten forum here discussing low IgA as common for gluten/celiac patients.
When her daughter was tested, she took her to a DAN doctor for the supplement supervision and dosing for safety's sake.
Some people just take zinc and B6 on their own.
OptiZinc is the one you would be best to use. It is easy on the stomach and well absorbed. Some zinc supplements cause nausea in some people.
I'll look up the Pyroluria sites for you later in the day.

Consider some kefir for your low IgA... it is lactose free. I only use 4 ounces a day, and it has really helped my GI issues tremendously --where yogurt seemed to do nothing.

Your low MCV shows that your B12 is working well. But it takes time for neuro things to resolve. The response to B12 in the bloodwork is faster than the neuro response. Many people don't have any anemia, but still have neuro symptoms. Your homocysteine is good ... you don't seem low in the B6, or that would be higher. But you may be low in zinc. You can have that tested too. A zinc/copper ratio is what is monitored in Pyroluria patients.

I think you should be relieved about your test results. They seem good so far, and reveal you are doing well.

One other thing to mention--
 

--about that low IgA level--while the genetic profile that results in low overall IgA is not uncommon, it can have a skewing effect on the Celiac/gluten sensitivity tests, particularly the IgA anti-Gliadin and IgA anti-transglutaminase tests (the latter is more specific for the villious intestinal damage of frank Celiac). Low IgA levels may mean that one can get a "false negative" on these IgA measurements--there may simply not be enough IgA antibody being produced by these to measure, and therefore some people may have celiac/gluten sensitivity without showing up positive on these.

JCC's The Gluten File has info on this, as well as alternative testing that is sometimes done in such situations:

http://neurotalk.psychcentral.com/thread1872.html

Yes, in general I'm very pleased with my blood test results and quite relieved that my homocysteine level was normal.

I'm trying to do more research on the Pyrolurria. What really confuses me is that my B-6 blood test came back totally normal. i was not tested for zinc or copper. I don't have any signs of zinc deficiency as far as I can tell....no white spots on my fingernails, for example. So I'm really kinda confused about the results of the Pyrolaurria urine test.

I had myself tested on a whim. I mainly want my teenage daughter to be tested, because she has developed an anxiety disorder with symptoms of de-realization. I know it sounds rather schizophrenic, but our therapist assures us that it's anxiety related. So through research, I discovered Pyrolaurria and wanted her to get tested for it. Schizophrenia runs in my husband's family (his late sister, and mother).

Anyway, I'm not keen on my 15-year-old taking pharmaceuticals. She is handling her symptoms with therapy -- has good grades, friends, etc. (BTW, if she REALLY needed pharmecuticials I would take her to a psychiatrist...but I know enough about the drugs to know that I don't want to start her on that path just yet). I had an inkling that maybe she had Pyrolaurria. I had her start taking my B-Complex vitamin, as well as some extra calcium and magnesium, and a multi-vitamin. She said it has really helped and her symptoms diminished somewhat. But to go OFF her vitamins to get tested for Pyrolaurria was very difficult for her. She made it almost a week and said that her symptoms had returned and gotten worse. She had some important tests at school and decided to go back on her vitamins so that she could concentrate.

So we're waiting until Thanksgiving Break for her to go off her vitamins and finally do the urine test for Pyrolaurria. Now that I know that I apparently have it, there is a really good chance that she has it, too.

I'm getting a second opinion for myself from a more holistic group of doctors in my area who deal with thyroid and hormone issues. They are called the Holtorf Group, and are mainly based in S. Cal but have an office where I live in N. Calif. I need to call them today to see if they deal with Pyrolaurria.

Anyway, some of this really makes sense to me. When I am stressed-out, it seems that my entire "system" gets totally out of whack. I don't sleep well, have heart palpitations, some mental issues.....now I understand this cycle a little better. I feel like some pieces of the puzzle may be falling into place.

I also need to investigate that IGA thing more thoroughly, as well. Truthfully I don't think that i have a gluten problem, but I want to know for sure. My Endocrinologist apparently doesn't understand it well enough to recommend any other testing for me.

Hey, I'd appreciate if somone could answer this ASAP.

Can too much B-12 cause ringing in the ears, a racing heart, and feelings of anxiety or panic?

The past few days I've had these symptoms.

I have a dental procedure (gum grafting) coming up on Monday that I'm stressed out about. At first I thought it was that....but honestly it feels more "organic" to me than just being anxious about this procedure. I'm having trouble sleeping and feel as if I've had too much caffeine (I don't drink ANY caffeine or take ANY stimulants because they make me jumpy)

I assume that if I have been over-doing it with the B-12, maybe it will just go out of my system after a few days and I'll feel better soon?

I have gone as far as taking some Ativan, but it doesn't seem to be calming me down much....which is very weird because usually it works very well and even puts me to sleep.

I have decided today to take a break from all of my vitamins and also my Synthroid. This feels a little bit like over-replacement of thyroid hormone, but it's hard to tell. It actually feels worse than when my Synthroid is too much....my heart is racing constantly these past few days. The only thing I can think of is that I've been taking the 5,000 mg of B-12 every day, and maybe at this point that's too much for me now that my level has gotten somewhat corrected?

@zee: I have not had any problems with B12, and I am taking more than you are.

Hope that helps.

I was getting that from too much R-lipoic acid. I am back down to 100mg a day...stablilized form.

You could always just cut back if you want... to use up the 5mg just take it twice a week for now. When you get 1mg, you could do that daily.

I also get hyper on folic acid...I don't take much of that at all anymore.

I am taking the Methycoblamin B12 lmg and it works good. I also am on the R-lipoicAcid (100mg). I had been on the Methyl B12 for about 4 weeks before adding the R-Lipoic Acid.

I gradually noticed much more energy and was loosing a few pounds. It has been about 2 months with R-Lipoic and I have lost between 8 - 10 lbsl (varies). I can't imagine going any higher than 100 Mg's. I do believe that has also added additional anxiety. I am taking these, in addition to the Bentofolamine (B1) in the hope of regenerating nerves. (some success has been noted by some). I will stay on this regimein for the possible nerve regenerating.

Also, I believe a poster said they had gone off vitamins, including Synthroid. I hope the endocrinologist is aware of stopping the Synthroid. That is something not to just abruptly stop.

I didn't stop my Synthroid, only my vitamins.

When you get your thyroid levels tested, you should not take the Synthroid the morning of the test. Or additionally you can skip one previous day as well. But no more than that.

I do believe it was the B-12 that was making me jumpy. After not taking it for a few days, the anxiety started to settle down. Then I got some exercise, and had some orange juice (for the potassium), and between those two things the anxiety level went way down and then I was feeling normal again.

I just had my gum grafting surgery today and it went well. The inside of my mouth is all stitched up and I'm staying ahead of the pain with tylenol or ibuprofen (not together). I will probably continue to take a break from B-12 for a few days and then resume with the 1,000 mg and all my regular stuff.

Do any of you know anything about Pyrolurria? I just found out that I have it via a urine test. It causes malabsorption of B-6, Zinc, and a few other minerals. I'm in the process of trying to find a doctor who knows how to treat it. I have read that people with Pyrolaurria need to take P5P in addition to regular B-6. Luckily, my B-complex vitamin DOES have P5P, although not in the dose recommended to treat the condition. It's considered controversial. Some MD's don't believe that it exists. Naturopaths mainly treat it, but there are a few MDs who understand it, such as group called the Pfeifer Center in the Chicago area. (But I live in California).

What pyroluria does is increase excretion of the B6 and zinc.
This is because the pyrroles made by the liver in error, complex these two nutrients so they become unavailable to your other tissues for the work they do.

So taking extra is the solution. One has to watch high zinc intake because over time, it can block copper utilization and some believe manganese as well. So doctors test the minerals periodically in the blood. Also very high zinc over time can cause neuropathy. Low zinc tends to cause slow wound healing of the skin and lowered immunity to viruses and bacteria.
Some drugs actually deplete zinc... ACE inhibitors for blood pressure, diuretics, some antivirals, hydralazine, acid blocking drugs.

I never get the "energized" B12 reactions, for some reason.
But I suppose in people who start out very low (I have fairly normal levels), the switch to higher will energize your metabolism some. When you take oral, daily, the amount really absorbed it not high. People with intact intrinsic factor may absorb more. B12 is excreted in the bile, and eliminated.

I guess I misunderstood when you mentioned you decided to take a break from all your vitamins and also synthroid.

Hi, mrsD! I posted a thread here a while back about my small fiber neuropathy, and the other members told me you were on vacation at the time, but I was wondering if there was anything you could suggest for me. Many thanks!

The end of the URL is thread154928.html, title "Small fiber neuropathy not getting better or worse - advice?" (sorry, it won't let me post a link!)