[MelodyL]

Originally Posted by mrsD

Some B6 is necessary. Extremely high doses in the gram range for a long time can cause a neuropathy. (but that was using pyridoxine, which is not active).

Very low B6 (a deficiency) also causes neuropathy.

This poster, Mel, is using medications that deplete B6, so her need is greater than those not using those medications.

See why I ask questions?
Because today I learned something new....from YOU

Thanks so much.

Take care

Melody

[kate525]

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

Originally Posted by MelodyL

See why I ask questions?
Because today I learned something new....from YOU

Thanks so much.

Take care

Melody

[mrsD]

Originally Posted by kate525

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.

[zeeclass6]

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.

[mrsD]

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.

[glenntaj]

--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

[bis22]

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!)

[zeeclass6]

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.

[zeeclass6]

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?