I have high levels of B6. Lab work was over 100 ng/mL

[asba23]

I am having electrical shock symptoms  in my feet that go on for over an hour. It's been 4 years of this. I don't know how to stop it. I am not taking any supplements with B6 in it. I have done over 150 saunas infrared.

[HSAS]

https://asbmr.onlinelibrary.wiley.com/doi/full/10.1002/jbmr.3226   check for HPP , abnormal high level of B6 can indicates you have that.  Check  your Protein Electrophoresis ( blood test)

[Paxiled]

Just one caveat -- there is only one person pushing this MTHFR thing, the naturopath Dr. Lynch.  He is not an MD, which doesn't mean he doesn't know what he's talking about but MDs do not agree with him.  Again, I'm no expert on this and only researched it because someone who posts on here occasionally mentioned this and I researched it for myself.  What I learned is that while there are several common genetic mutations that affect methylation, almost nobody shows any signs of actually having a problem with it.  Again, as I understand it, the problem shows as far as MDs are concerned as a homocysteine problem, which is an oxidation problem that is one suspected indicator of heart disease.  This is controlled by the combination of B6, B12, and folate when in proper balance, and you will see in what are called homocysteine supplement formulas.  There is no natural form of folate to supplement with -- they are all synthetic, man-made substances, which doesn't mean they don't work.  Lots of supplements used in medicine are man made.  The main thing is, it's rare for these defects to actually cause a problem that is discernible, and the only dissenter out there seems to be Dr. Lynch.  Is he right?  I have no idea.  The training naturopaths get is quite different than what MDs get, and genetic mutations are definitely not an area that naturopaths would be expert in unless they learn it on their own.  Maybe Dr. Lynch has, and maybe he hasn't.  It's always hard to tell who has truth and who is trying to make money and sell books.  It's definitely worth looking into for you, but I'm standing by my opinion that you're going to need to see unusual specialists who will really look into this as it could be caused by any number of things, and you seem to have an inordinate number of things that have "caused" your symptoms, such as iodine and antibiotics, and because your symptoms come and go.  Look into everything, but realize that not all information is factual information and that most "genetic" problems aren't.  We just aren't that far along in tying health problems to genetic markers at this point (and I'm not sure we really want to go all the way there, anyway, for ethical reasons of evolution vs. people believing they can make a better human).  Look into everything, but with your logic intact -- as I said, if you do take methyl folate and you don't actually need it, it can cause problems for you, which Dr. Lynch does warn about on his website.  

[asba23]

What type of unusual specialist are you recommending I see? I would be happy to do that but don't know who would specialize in this.   I have NH insurance so need to see some one in NH.

[Paxiled]

Not necessarily.  The type of insurance you have and how thorough the coverage is determines who they will pay to see.  For example, an HMO is very restrictive on who you can see, as is a PPO if you're not allowed to go out of network.  Many insurance companies have policies that allow some coverage for out of network physicians, and all insurance companies, if they don't have anyone in their network who has been able to help you, can be appealed to and might on appeal agree to pay for an outside practitioner.  Not likely, but possible.  When I say special practitioners, I'm referring to places that have decided to run their operations to go the extra mile for difficult cases, such as the Mayo Clinic, Johns Hopkins, and many university hospitals.  These places because of this are able to attract the most curious and passionate physicians who don't want to just see the maximum amount of patients each day to maximize their income and don't really care about the rest of it as much.  We have a tendency in the US to see doctors as religious figures who perform miracles rather than humans just like the rest of us, with some being really good at it and really passionate about it and most being mediocre folks phoning it in.  We're like that, why would we expect most docs to not be like that?  

[Red_Star]

I found an article from the mthfr website - MTHFR C677T Mutation: Basic Protocol by Dr Lynch which is very informative on lifestyle and supplements. If you can't find this article let me know and I'll send you the link. One supplement mentioned is homocysteX which contains 800 mcg of methylfolate, 1000 mcg of methylcobalamin and 25 mg of pyridoxal-5-phosphate.

[asba23]

If you could sent me the link that would be so greatly appreciated!!!
Thank you so much!!

[Red_Star]

Excerpt from Easy Immune System Health - Find Out the Real Reason
For Vitamin B6 Toxicity...

"The MTHFR gene is extremely common and can lead to a problem processing the B Vitamins, making people particularly susceptible to deficiency of B12, folic acid, and Vitamin B6. Ironically, in these cases, Vitamin B6 Levels and Vitamin B12 Levels will be HIGH, despite actually being a DEFICIENCY of these vitamins. This is because the vitamins build up in the bloodstream, where they are measured, but the vitamins can't get into the cells where they are needed.


“The finding of high vitamin B6 levels is consistent with
recent reports of low levels of [Vitamin B6]. This may
explain the functional need for high-dose
vitamin B6 supplementation in many
children and adults with autism.”
Pilot Study of a Moderate Dose Multivitamin/Mineral
Supplement for Children with Autistic Spectrum Disorder

Because of this, the solution to Vitamin B6 Toxicity in those who are taking no or little Vitamin B6 is to get tested for the MTHFR gene, and if positive, they will need to actually supplement with high doses of B Vitamins, despite having high levels, but in the proper forms that can be processed by the body.

In the case of Vitamin B6 toxicity, the ‘active’ form of Vitamin B6 known as P5P, also known as pyridoxal-5-phosphate. While in the case of Vitamin B12, the active form is known as Methylcobalamin B12. These forms are able to be processed by the body so that they get into the cells where they can be utilized for body processes.

Ironically, high B6 levels in blood will decrease and return to NORMAL when sufficient amounts of P5P are taken to remedy the deficiency.  The solution to Vitamin B6 Toxicity if you have the MTHFR gene is to stop getting the synthetic forms of B Vitamins, and get the proper active forms the body requires, like that present in a P5P supplement, Methylcobalamin B12, and a MTHFR Safe Multivitamin and Mineral Supplement."

[asba23]

Wow , Thank you so much!  this is very interesting. Where did you hear this from? I'm afraid to take B6 since my level is over 100 and I am having crazy electrical shocks in my feet. I am taking 6000 mcg of B-12 Methylcobalamin  a day. How much B6 would you suggest I take int the PSP form? What type of mineral supplement are you suggesting I need. I do have the  MTHFR C677t Mutation.

[Paxiled]

The heading says you have a B6 problem, but your text seems to imply you feel you've damaged yourself taking too many infrared saunas, so it's not completely clear what's happening.  B6 neuropathy is a real thing.  If your B6 is high, it's high for some reason -- it is perhaps an imbalance caused by folate or B12 levels, as these three B vitamins are in balance with one another in the body.  Sometimes taking too much B12 and folate can lower your levels of B6, but you do need to learn from your medical professionals why your B6 levels are high, if in fact that's the case -- sometimes one test will show them high and the next a day later might not.  

[Paxiled]

Also, your symptom can be caused by other things as well.  What are your doctors doing and saying about this?

[asba23]

No, I started seeing a Naturopath as my MD had no answers or suggestions. The Naturopath took blood work and my B6 level was 112. He had me take the infrared saunas which were able to lower my b6 level to 59. He can't seem to get it any lower, though I continue to take the saunas 4 to 5 days a week. I am still experiencing the electrical shock symptoms in my feet for 20 to 40 minutes every few days.   Are you suggesting I take more B-12 and folate? I am taking 4000mcg of B12 a day. No folate. Can high levels of B6 in my body be caused by too much fish, chicken and beef?

[asba23]

It took months of saunas, 7 days a week, to get my B6 level down from 112 to 59.

[Paxiled]

I have no idea why an infrared sauna would have anything to do with B6 levels, so I'm not familiar at all with that.  I'm not sure why you gave up on getting  diagnosis from someone as to where the high B6 levels were coming from in the first place and whether they were high enough to cause the neuropathy.  There are many reasons you might be feeling what you're feeling -- could just be an impinged nerve in your foot, for example, from some form of trauma -- sometimes people think they have plantar fasciitis when they have an impinged nerve.  Could be related to diabetes.  Could be a host of things.  Might not be the B6, might be the B6.  You can Google foods high in B6 and see if you're eating too many of them, but it's unlikely.  Most times excess B6 comes from supplementation at too high levels or from genetic problems that affect folate or other nutrients.  So you see, without a definitive diagnosis, how do you know you're treating the right thing in the right way?  Your regular doctor isn't going to know much about neuropathy -- usually, if they think it's a problem they send you to a neurologist, I think.  Somebody might order an MRI to see if something is wrong in your foot.  Regular docs don't usually do these things, they usually refer to specialists.  Naturopaths don't do these tests either -- yours is assuming the problem is B6 but what has he done to diagnose it?  They usually don't have the skills to rule out all the other things that might be the problem, assuming I'm getting you right and the only doc you've seen is your primary care physician.  Has there been improvement with the steep drop in B6?  Is your naturopath checking your other nutrients -- what else might this treatment be leaching out of you?  And yes, sometimes taking excess folate and B12 will cause B6 to drop, as they are in balance normally in the body and too much of one can cause another to be too low.  It's a very individual thing depending on how the body responds.  Don't give up looking for answers if you're not getting them.  Also, you say you're only experiencing the problem 20-40 minutes a day -- that might explain why your doctor didn't understand the issue -- that's not typical of neuropathy, which would be there chronically.  I haven't a clue what's going on.  You aren't by any chance applying some pressure on that area, say tight heels or a tight knee strap or something of that kind just before this happens?  Standing on a hard surface at work at the time it happens?  Lots of people, for example, get nerve pain from wearing backpacks that are too heavy -- happened to me once.  

[asba23]

Hi, I'll try to explain in more detail. The saunas are medical saunas that are suppose to detox you according to the Naturopath. They did help lower the B6 from 112.5 to 59.
what kind of doctor are you recommending I go to in order to find out WHY my B6 levels were high? This is obviously  one of my main goals!  I was taking a supplement with B6 which I stopped 14 months ago when I began seeing the Naturopath.
Prior to the Naturopath when this all begin, I went to a Neurologist. He ran tests, poked with pins, but never checked my B6. He decided it was a strange case of restless foot syndrome. He put me on a high dose of medication which helped but I still had break throughs and the meds made me tired. This is NOT an issue of pressure to the area, impinged nerve or trauma. It happens to both feet. The electrical shocks are strong. I get one zap and then it goes away and then I get one every 6 to 10 seconds  for 20 minutes to 60 minutes in duration.
I got so sick of taking the medication for restless foot syndrome I went to a natural pharmacist. She looked through all her books and said I needed L-tyrosine. I started taking this and eventually at 3000 mg a day I could stop the medication for Restless foot syndrome. But i had to take it right at 6am , 1pm  and 7pm every day (1000 mg 3 times a day) or I would have a break through. It was just masking the condition. I wanted to know what was causing this so
I then went to the Naturopath.
He ran all kinds of blood work 12/2016.
His findings were
1. B6 112.5 H
2. found MTHFR that I was "heterozygous for the C677T mutation and negative ( normal for the A1298C mutation in the MTHFR gene."
3. White blood cell count low 2.1
4. MCV 103.2 High
5.MCH 34.5 High
6.Absolute Neutrophils 762 Low
7.Bun/Creatinine Ration 52 H
8. T4 3.8 L
9. T3 Free 2.0 L
10. T3 total 38. L

The naturopath put me on a Thyroid supplement which has helped my thyroid condition ( after re testing labs)He  has started and stopped b-12 2000 mcg a day and Methyl Folate (folate 2000 mcg DFE)Didn't seem to be helping but
I think perhaps I wasn't taking the right dose? We did increase the B12 to 4000 mcg a day but still had occasional episodes but we  never added back in the Methyl folate.  Maybe I need more B 12 and to start the Methyl Folate again.
If My B6 is so high I must need more of the others to bring it down since they work together as you say?
He also tried Magnesium and that increased my foot reactions.
In all of this I stopped wearing perfume and any products with it and it my level of B 6 went to 39 but it sprung back up to 59 after a Cat scan 2 months ago. They messed up the cat scan at the ER and missed an area ( this cat scan was done because of an unrelated issue, severe headache which has since resolved.  to a severe headache) so I had to go back 24 hours later for a second cat scan!  I had  severe foot  reaction to the Iodine in the Cat Scan.
My B6 level now is still at 59.
I eat a lot of fish and meat a day (high protein diet) but the naturopath said" I could eat all the fish in the sea and that wouldn't effect it" So what is causing it?!!
I think you might be correct that it is a genetic problem that effects folate or other nutrients? What are your suggestions? The foot reactions get worse if I take an antibiotic. Also had an acute reaction   when my gynecologist use Lugols Iodine solution during a procedure. I am going to loose my job if I have another foot reaction during work. I can't focus, it's so bad.
Do you have any suggestions on other tests or doctors I should go to or supplements I should try? Or dosage of B 12 and Methyl folate or??

[Paxiled]

No, I don't.  Your naturopath has done a lot of the appropriate testing, but methyl folate is an odd problem to have -- just having one of the genetic markers for a problem doesn't mean you have one, it just means you're more likely to have one.  If you don't have one, that supplement, which is completely artificial and man-made -- the body makes it out of folic found in food or another artificial man-made supplement, folic acid -- can cause problems.  So you need someone who will work with it and change things up until they find the problem.  But I'm not a medical expert and can't tell you what's wrong, only avenues of exploration you might not have used.  As I said, your naturopath does seem to be trying and giving you a lot of tests your doctors obviously should have given you and didn't -- neurologists are the ones who treat this type of thing usually but you have to find one who cares.  Your naturopath seems to care, but they do use a lot of modalities that are not proven to work but are suspected to work -- I suspect those baths fall in that category.  The fact so many things seem to cause the problem suggests something very unusual, in which case you're in Johns Hopkins and Mayo Clinic type land or hoping your naturopath will eventually find what works, or you're in mental illness land, which is what restless leg syndrome kind of is -- something gone wrong with your neurotransmitters which is treated with antidepressant-like drugs, which don't cure problems but tamp down the symptoms.  Also sounds like you have some significant auto-immune problems causing you to be sensitive to a lot of things, which is often caused by taking too many antibiotics.  

[Paxiled]

I meant to add, have you ever considered stopping the high protein diet?  These are fad diets with no proof they are actually good for you -- they can help one reduce weight or put on muscle in the short term, but long term the longest lived people and least obese do not eat high protein diets.  Maybe something like the panoply of diets more like people have eaten through history, grouped under the name Mediterranean Diet, would help you given the high protein diet isn't.

[asba23]

The Naturopath put me on the high protein diet. I also eat a lot of vegies and brown rice.
It seems evident I have neurological damage from the high level of B6. I don't understand why I can't get the B6 out of my body. I do enjoy a glass of wine at night . Would that increase my levels? B6 seems to be in all foods. Not much you can eat if you take it out of your diet.

[Paxiled]

Again, diet is almost never the cause of excess B6 -- what your body doesn't use it washes out.  It's usually found in those who take supplements of very high dosage or in those with some underlying problem, which is probably what's going on in your case and you haven't discovered yet what it is.  Until you do, you're flying blind.  And still again, you actually don't know the B6 is causing this -- you just suspect it is.  I have no idea why you were put on a high protein diet, except possibly because most B6 is found in plant food.  Wish I could help, I wish someone could help, I think you need to look for those special physicians who look for these hard to find causes of things.