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Old 07-18-2012, 12:40 PM   #1
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tangerine49 HB User
Symptoms of Longterm Elevated Vitamin B6 Levels?

I would like to talk to anyone out there who has significantly elevated vitamin B6 levels and who also has been diagnosed peripheral neuropathy.

I went to see a neuro 4 years ago because of complaints of mild numbness in hands and feet, burning (sunburnt type sensations) worse when covered with shoes and in hot climates; flushing of skin (especially in the legs); instability and heaviness in legs; diminished reflexes, etc.

My nerve conduction tests were abnormal when tested. The neuro called it idiopathic polyneuropathy. I also have mild Hashis (which according to my own record keeping) probably starting in the lates 90's when I used to have a TSH of 1.62 (the lowest I know of for which I have records), but is now bordering at or above 4 for the past 7 or so years. I also have significantly elevated antibodies (both types Anti-TPO, Anti-TG), and mild enlargement of the right thyroid lobe.

I have only been on thyroid meds (both natural and synthetic) for the past few years, but have still not been getting good results and am still trying to get this sorted out and optimized. Two years after seeing my neuro, I asked to have a Vitamin B6 serum test done (not a standard test here) - through my Naturopath, which I had to research on my own and get done through a major Canadian Centre. Most docs did not even know it was available (not even my neuro). It turns out that my levels were 10 times higher than the upper range of normal. I had seen a Naturopath about 15 years ago, and was given Solaray Multis to take. I was also taking a men's multi later (when Solaray was no longer available in Canada). I believe these multis had up to 50mgs of B6 as a daily dose. As soon as I found out about my B6 levels I stopped the multis altogether. It has taken about 1 year, and my levels are now about 150% of the normal range (much less than the original test). Of course we all believe that B6 is 'supposed' to be water soluble and go right through you, but for some reason this did not happen for me. When I told my neuro about this and showed him a copy of the test he was surprised. He knew of no cases of vitamin induced neuropathy on such low levels of B6. Anyway, my symptoms have not changed at all in 4 years, in some cases I think they are worse.

Long story short, for those of you that have B6 elevations and peripheral neuropathy, what are your symptoms EXACTLY? Since I have other health issues complicating the matter, I am trying to figure out how much of my neuropathy is based on the B6 versus thyroid/metabolic issues, etc. If you could let me know what your hands and feet feel like exactly, it would be very helpful to me, as well as any other symptoms that you may have and what if anything you are doing about it. It's been a struggle for me through all of this. I used to be the picture of health, boundless energy. I have always taken care of myself, never smoked, non-drinker, eat healthy, gym regular, etc. So I'd like to start some dialogue on those in the same boat.

Sorry for the long message. Thanks very much.

You can send me a private message if you wish or post on here.

 
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Old 04-05-2013, 09:47 AM   #2
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hoyheaven1 HB User
Re: Symptoms of Longterm Elevated Vitamin B6 Levels?

You are describing me. I have been DX with Hashimtos Thyroid. Elevated B6 (97). I am 50 years old & feeling exhausted all the time. Feet & legs burns, are numb 7 tingle almost all the time. I have heart palaptions & have been DX with PVC's. I have had more kidney stones than I can count.Also have kidney infections all the time. ALL sypmtons/side effects of elevated B6 & Hashimots thyroid. I do NOT take B6 supplements. My concern is all of this is simply tearing my body down. I feel like I am gettin older by the hour. I too am looking for answers. I would also love to hear from anyone with any advice.

 
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Old 04-13-2013, 04:12 PM   #3
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Re: Symptoms of Longterm Elevated Vitamin B6 Levels?

Hi I recently was diagnosed with very high B6 levels. Shocking as I was only taking a multi-vitamin and I had always read B vitamins are water-soluable. I had no idea it gets into the small nerve fibers and can cause permanent damage if the symptoms do not go away after 6 months. I was eating 1/2 an avocado almost daily which is also high in B6 but surely there must be something else wrong. I do not have any thyroid problems so the endocrinologist says after numerous testing to find out why I have such severe osteoporosis.
The symptoms I have is the sensation I am standing on an escalator. Other times I think my cell phone is vibrating on my hip. I get sharp pains in my shins, then my calves, etc. I have burning, numbness, and dull aches. I have horrible inappropriate sweating, weakness, liver pain and heart palpatations. However, I was also recently diagnosed with POTS/Dysautonomia and that sure can cause havoc. I am thankful the neurologist did the test as most drs only do B12 blood work. I do wonder why can someone else take a vitamin and be ok and I can't? What isn't working in me?

 
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Old 05-21-2013, 11:56 AM   #4
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koco1357 HB User
Re: Symptoms of Longterm Elevated Vitamin B6 Levels?

tangerline49, you still out there?
interesting, i got the same problem!
B6 5x too high, weird tingling in face, arms hands, legs,even trunk occasionally.
Pulses in legs, fatigue, insomnia.
In my case i was taking about 20mg of B6 supplements per day for about 2-3 years, about 1000% above RDA.

But not in toxic levels per internet information.

I guess everybody reacts differently?

I was worked up by neurologist for MS and had thyroid checked, all okay.
No problems with kidneys.

I read it can take months if not years, sometimes forever for nervous system to calm down. . . .

 
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Old 01-09-2014, 10:06 AM   #5
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UFGatorGuy20 HB User
Re: Symptoms of Longterm Elevated Vitamin B6 Levels?

Hi All,

I'm also experiencing the following symptoms:

Peripheral Neuropathy:
- Finger Numbness, Tingling, Striking Pain
- Foot Numbness, Tinging, Striking Pain
- Weak legs at times
- Fatigue
- Small muscle twitches in random places all over

Hyperthyroidism:
- Jittery
- Elevated Heart Rate at rest
- Significant Mood Swings Abruptly

I basically self diagnosed myself with MS. Thanks *****... you suck. However, I had an MRI done and my neurologist had no concerns. My bloodwork shows my TSH is still within range, but on the low end (pointing towards an overactive thyroid). My B6 levels were 4 times the upper limit.

I was doing intense running / cross-fit. I was also taking supplements, but in total, no more than 12-15mg B6 per day. Even though I was exercising frequently, I still wasn't eating all that well.

I've done a TON of research the last month or so to look at natural ways to combat all this. In response to these symptoms I've done the following:

- Eliminated gluten and dairy from my diet
- Eliminated B6 from my diet as much as possible
- Focus on high anti-inflammatory foods
- I drink only water and lots of it
- I'm doing breathing exercises
- I'm doing some mild meditation / yoga
- Just trying to find ways to reduce stress and take my mind off the situation (I'll go fishing, go for a walk, hang out with family / friends)
- I'm looking at starting a massage protocol

I can wholeheartedly and confidently tell you that I do feel an improvement. 2-3 months ago, I was sleeping with elbow splints and ice packs on my hands. I thought I had entraped nerves from working out and wanted to help nerve conduction. I was taking cold showers. I had some wicked fatigue... couldn't walk more than 1/2 mile at the mall without needing to sit down.

Reduce inflamation and stress in your body. I know it's easy to say. I'm a chronic worrier... since 4 years old. Distract yourself. Smile even if you have nothing to smile about. Find a hobby.

Even as I typed through this reply I can feel some small twitches in my calves and hamstrings and some pain coming back in my fingers. So what. It comes and goes. Just make sure your attitude and desire to improve remain constant.

 
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Old 01-23-2014, 05:24 AM   #6
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pattycal HB User
Re: Symptoms of Longterm Elevated Vitamin B6 Levels?

Thanks UFGatorGuy20 for being so specific about what you're doing to get better. I just got B6 levels tested and it's at 143.7 ug/l with a safe range of 10-80. I have had the same symptoms you mentioned for the last 5 years. The symptoms come and go with no rhyme or reason. I also have hashimotos and the myriad of symptoms that go with it.

However, I was also recently diagnosed with mononucleosis. The last few months certain symptoms intensified such as twitching all over my body, extreme fatigue and shakiness (particularly in my arms). Well before I got mono I already suspected chronic fatigue syndrome. I basically became bed-ridden. Strangely, I found that when my energy increased, the more I did light walking, the better I felt.

What has helped me:[LIST][*]Stay mentally and physically as calm as possible. I used to be extremely hectic[*]Get off coffee (God I miss it)[*]No serious weight-lifting, just hour long light exercise (if I am able)[*]anti-inflammatory food[*]sea salt to raise my low blood pressure[*]drink a lot to avoid fatigue, headaches and constipation
  1. Get off grains (stopped getting gassy)
  2. Go to bed early to ensure a good nights sleep. Without this I am a jittery mess
  3. Take hydrochloric acid capsules to deal with bad case of GERDs
Do yoga
Epsom salt baths

Things I am doing, but dont know if they are helping:
Taking a lot of supplements (of course, now I will stop the B6)
Drinking kefir - water and milk

I have also been diagnosed with leaky gut (Zonulin in serum) at 37.9 ng/ml with normal range between 14-22. Could this play a role? I am super low in magnesium and calcium. Gastrointestinal problems run in the family. Recently my daughter was also diagnosed with Hashimotos .

My plan is to go to an immunologist to see if I have a primary immunodeficiency. I just want to get at the root of the problem. I figure that high levels of B6 is just a symptom further on down the line.

I am very intent on thinking more positively, although I dont think my frame of mind is at the root of the problem. People consider me to be pretty positive as I am now.

Last edited by Administrator; 01-23-2014 at 08:03 AM.

 
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Old 01-24-2014, 04:32 AM   #7
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UFGatorGuy20 HB User
Re: Symptoms of Longterm Elevated Vitamin B6 Levels?

Quote:
Originally Posted by pattycal View Post
Thanks UFGatorGuy20 for being so specific about what you're doing to get better. I just got B6 levels tested and it's at 143.7 ug/l with a safe range of 10-80. I have had the same symptoms you mentioned for the last 5 years. The symptoms come and go with no rhyme or reason. I also have hashimotos and the myriad of symptoms that go with it.

However, I was also recently diagnosed with mononucleosis. The last few months certain symptoms intensified such as twitching all over my body, extreme fatigue and shakiness (particularly in my arms). Well before I got mono I already suspected chronic fatigue syndrome. I basically became bed-ridden. Strangely, I found that when my energy increased, the more I did light walking, the better I felt.

What has helped me:[LIST][*]Stay mentally and physically as calm as possible. I used to be extremely hectic[*]Get off coffee (God I miss it)[*]No serious weight-lifting, just hour long light exercise (if I am able)[*]anti-inflammatory food[*]sea salt to raise my low blood pressure[*]drink a lot to avoid fatigue, headaches and constipation
  1. Get off grains (stopped getting gassy)
  2. Go to bed early to ensure a good nights sleep. Without this I am a jittery mess
  3. Take hydrochloric acid capsules to deal with bad case of GERDs
Do yoga
Epsom salt baths

Things I am doing, but dont know if they are helping:
Taking a lot of supplements (of course, now I will stop the B6)
Drinking kefir - water and milk

I have also been diagnosed with leaky gut (Zonulin in serum) at 37.9 ng/ml with normal range between 14-22. Could this play a role? I am super low in magnesium and calcium. Gastrointestinal problems run in the family. Recently my daughter was also diagnosed with Hashimotos .

My plan is to go to an immunologist to see if I have a primary immunodeficiency. I just want to get at the root of the problem. I figure that high levels of B6 is just a symptom further on down the line.

I am very intent on thinking more positively, although I dont think my frame of mind is at the root of the problem. People consider me to be pretty positive as I am now.
Pattycal,

You and I are on similar paths. I do not have mono nor a diagnosed thyroid problem, but the symptoms we are managing are similar, and our management plans are similar. I understand that calcium and magnesium have important roles. A doctor I saw said I need to increase my magnesium consumption as your body uses this mineral to combat stress. I'm doing epsom salt baths maybe twice a week, applying a magnesium lotion daily (same people that make Epsom salts) and taking magnesium asporotate (200mg) 3 times per day. My muscle twitches have definitely reduced. My adrenal glands were toast, so I'm taking an adrenal rebuilder.

My biggest struggle is still managing stress and worry. When my symptoms change or something new comes along, I get into a bit of a panic mode. I've started down a path that may not be the best long-term solution, but it has dramatically helped the last few days. I was prescribed clonazepam (slow release version of xanax). I'll pop half of one at around 10am then the other half around 2pm to get me through my work day. It just "takes the load off" and puts me into "I really don't care what my body is doing" mode. When I get home, I'll have a couple beers. This isn't a daily ritual. But, something that I'll do on a tough day. For example, two nights ago I had 3 gluten free apple cider beers and an organic pizza. I'm still here. No symptom changes. No sick feeling.

I'm research combinations of natural stress fighting elements: L-Theanine, 5-HTP, Kava Kava, Lemon Balm, etc

Otherwise, I'm strict with no meds, natural supplements, high vegetable intake. I also went for a light swedish massage last weekend. It was fabulous, but I haven't seen any long term benefits from it. I'll likely save my $ and use it for healthy grocery shopping.

Good luck. Maintain a positive attitude. Continue with your updates. I'm getting a full blood panel taken on Monday, so I'll post my status again.

 
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Old 01-24-2014, 04:50 AM   #8
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UFGatorGuy20 HB User
Re: Symptoms of Longterm Elevated Vitamin B6 Levels?

One last note... stay active. I workout 5 times a week. Not intense weight lifting. But, I'll lift weights in ways that don't affect my elbow nerves. So no curls. I'll get on an exercise bike almost daily. All research I've come across says that remaining active is key for nerve issues. Getting good rest is key as well. I'm sleeping great lately. At least 7 hours / night with maybe 1-2 quick interruptions. Just part of the overall strategy.

 
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Old 01-26-2014, 06:29 AM   #9
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pattycal HB User
Re: Symptoms of Longterm Elevated Vitamin B6 Levels?

Hi UFGatorGuy20

It's great to hear that regular exercise makes such a difference for you. I dont care for the exercise bike but in winter there's no way around it so I'll have to find a way to make it bearable. Your stress fighting elements are new to me, so I'll check them out.
I also got a full body massage and felt no real benefits except for enjoying it immensely.

What do you mean by an adrenal rebuilder? My adrenals were also tested using a saliva test and they are also rock bottom.
Pattycal

 
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