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Old 03-10-2011, 04:58 PM #1
PNGUY PNGUY is offline
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Default My Experience with PN, Supplments, and Blood Tests

HiHi Everyone:

I am new on here, and would like to share my experience with Peripheral Neuropathy. I am a mid 40's male, in good health, athletic, and follow a healthy lifestyle (i.e. never smoked, do not drink, never used drugs, exercise, eat well, take supplements, etc).

A few years ago I went to see my doctor about something and casually mentioned that I had sensitive hands and feet. Apparently, I had mentioned this before a few times in the past over the years. The doctor sent me to see a Neuro. The neuro took tests and concluded that I had a mild form of peripheral neuropathy of unknown origin. That was in 2008. The condition has fluctuated over the years. My complaints have been of burning hands and feet (varies), hypersensitivity of the hands and feet (varies), various odd sensations in my legs (as if the legs are going to 'give out' when I sit down), flushing of the skin (especially the legs), and muscle fatigue at the gym. I still seem to have a lot of strength when pushing weights.

I have had numerous tests done, many of which I asked for after doing my own research. In 2008 I had the following tests done, and am trying to connect the dots.

- Nerve conduction tests (about 65%-70% of normal)
- B12 tests (all good)
- MRI of Brain and Spine (which was normal)
- Moderate osteopenia
- Elevated thyroid antibodies (3x upper end of range), enlarged right lobe, mildly elevated TSH.
- Below normal C4 Complement
- Below normal vitamin D levels
- Below normal WBC (just under low end of range)
- Vitamin B6 level test (which is not a standard test here).

So far the vitamin B6 test had has the most interesting findings. I was taking a high quality multi-vitamin for numerous years that had 50mgs of vitamin B6 in the mix. I had read that vitamin B6 can be toxic at levels above 100mgs. I never considered that with my active lifestyle and taking 50mgs in a multi vitamin, that this might be a problem - especially considering that B6 is water soluble, and supposedly any excess excreted.. I pushed for the test and following were the results:

Normal Range for B6: 20-90 (do not remember unit off hand)

B6 Test #1 Baseline. Had been taking the multi with 50mgs of B6 for years. The results of my first test was a B6 level of 854, almost 10 times the upper end of the normal reference range.

B6 Test # 2. I then reduced my multi down to 1/3, so that I was only ingesting 17mgs of B6 for a period of 2 months. I had my B6 retested after two months, and the level had dropped to 450, but still 5 times higher than the upper end of the normal reference range.

B6 Test #3. I then stopped taking the multi altogether for two months, and therefore had with NO supplemental B6 in my diet. The results dropped down to 209. Still almost 2 times higher than the upper end of the normal reference range.

I was always under the impression that B6 was water soluble and did not store in the body, but from these tests, I am finding that perhaps my body is not using the B6 in a normal fashion. From what I have read B6 toxicity can cause similar symptoms to what I am feeling. I would like to be retested in several months to see if my B6 levels have normalized and if this has any impact on my symptoms over time. Perhaps it take a long time for my body to rid itself of B6.

I also take Zinc, selenium, vitamin C, Omega 3, and calcium for the Osteopenia. I am currently experimenting with the Calcium and magnesium. Although I am only taking less that 1000mgs a day of the Calcium, for some reason my 'leg shakiness' sensations seem to get worse when I am taking this. I have been tracking my vitamin intake on a regular basis and have been noting my sensations on a daily basis to see if I can extrapolate any connections. I have been doing this daily for the past two years.

My blood work for Calcium and Magnesium have always been normal, however I am wondering if there is any connection on why these two elements might cause the sensation that I am feeling, even though I am well below the normal doses that would be required for normal bone health?

I also got a requisition to be tested for selenium, zinc, and copper levels. I have read that the symptoms I am feeling can be related to a copper deficiency. Since I take a zinc supplement, I am speculating that perhaps the zinc has induced a copper deficiency (based on what I have read), which might also explain my lower white blood counts (lower copper). This is all just speculation, but am curious after pushing my doc for the B6 tests, and seeing the results. The above 3 supplements are taken in amounts well below the upper tolerable limits. After the B6 results came in, I decided to see if perhaps my supplements could be causing my neuropathy, based on the way my body processes them.

I am just curious if anyone else on here has had any of their vitamin and mineral levels tested and has done any research to see if perhaps their neuropathies are based on REGULAR SUPPLEMENTATION levels that could be causing problems over the long term. I had tried stopping all of my supplements for a month, but did not notice any changes. I do need these supplements for other health issues. I am thinking that the B6 stoppage might take several months (if any changes at all).

Please share your experiences. Maybe we can find some similarities.

Thanks.
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Old 03-10-2011, 06:01 PM #2
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I don't have much time now to go in depth with you.

But quickly:

Low copper levels lead to anemia. I am not sure about white blood cells. Some zinc supplements contain copper as insurance. The best one here in US is OptiZinc. That is what you should be using.

B6 IS stored for short periods of time in muscle cells. As pyridoxal it is important for muscle metabolism. Since you lift weights, this would be likely for you.

The "normal" lab ranges for vitamins were NOT made for people using supplements.
Here is my B6 thread: please read it.

It might be best to get more reliable testing, INTRAcellular testing by a place like Spectracell.
http://www.spectracell.com/


Your magnesium is important. You need a chelated form, not Oxide which is most common in supplements.

This is my magnesium thread:
http://neurotalk.psychcentral.com/thread1138.html

Vit D is critical. If you are low in this, you cannot absorb calcium properly or utilize it; There are paresthesias when calcium/magnesium ratios are not normal.
Here is more information:
http://neurotalk.psychcentral.com/thread92116.html

It is unusual for a male your age to have osteopenia. This implies some calcium/magnesium shortage, and/or some low testosterone levels, or poor Vit D3 status. (testosterone helps with bone density in males). It might be useful to get tested for this.
http://www.ianabolicsteroids.com/blo...openia-in-men/

One thing you must look at is the thyroid problem. Thyroid disease can cause PNs . (this was my initial cause when I was about 30 yrs old)

Another is a dietary intolerance to gluten. This also causes PNs and other confusing symptoms with malabsorption etc.
The Gluten File is a collection of medical papers illustrating many disorders that are connected to gluten intolerance including PN.
http://neurotalk.psychcentral.com/thread1872.html

You have alot of data to wade thru from your tests. I suggest you read up here at your leisure, and see how every sifts out for you. Don't expect regular doctors to know this stuff. They typically don't.
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Old 03-10-2011, 11:27 PM #3
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Default Thanks for the info...

I will read those links.

I forgot to mention that I have been taking dessicated thyroid 45mgs, and my TSH is now in the normal range. My free T3 and T4 have always been in the normal range. Also testosterone is normal.

I have no reason to doubt the labs tests. The B6 test was done at one of the top labs in Toronto. I am just wondering why my body is not getting rid of the B6.

My D levels were tested 3 times, after taking about 4000 IU of D for about a year, they have finally moved into the normal range.

I agree with you that it is odd for me to have the Osteopenia. I have been taking about 1000mg Calcium with 500 Magnesium daily. For some reason I thought this was making my leg 'shakiness' sensations worse so I stopped taking any supplemental calcium as a trial. I am not sure this has made any difference.

Anyway, I will read your links. I appreciate you taking the time to respond to my post. Thanks.
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Old 03-11-2011, 05:43 AM #4
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That leaves gluten intolerance. People with gluten issues, typically also have thyroid issues.

As I mentioned... lab ranges for vitamins in serum (not in the cells themselves) are difficult to interpret. Also they were made on people statistically who were NOT taking anything. So ranges DO NOT exist for people taking supplements. As far as I know, there are no ranges comparing B6 toxicity symptoms to levels either. The B6 serum test you had is really only diagnostic for very low levels. Low levels occur in a genetic problem and cause seizures. This is quite rare, only about 100 people in the world have it and are born with it.

Also if you do not convert B6 to its active type called pyridoxal 5 phosphate in the body, the B6 will build up.
You can buy the active form as P5P. The better types are enteric coated. (NOW brand is typically what I recommend.)

B6 is excreted in the urine, but more slowly than some other water soluble vitamins.
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Old 03-11-2011, 10:28 AM #5
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may I second the gluten/celiac suggestion? thyroid+osteopenia+ low vitamin D .....big red flag!
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Old 03-12-2011, 02:23 PM #6
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Default Gluten

I had several antibody tests for Gluten, and these came back negative. I do not have any of the known symptoms of Gluten intolerance (I know there sometimes does not have to be). I tried going Gluten free for two months, and I actually felt worse (as I track my symptoms daily). I also tried avoiding milk, etc, as I had an Elisa test done. Felt worse when I went to soy.

My folks both have Osteo issues (dad especially). So there is a genetic component I cannot dismiss. That being said, I do not eat yogurt or cheese, so perhaps I am just not getting enough calcium. My D levels are ok, since I upped my D to 4000I IU per day. I am just not sure if taking the Opti-Cal is having negative effects on the way I feel. I must admit, that since this all started, my hands and feet have really not changed much (as far as symptoms) - in fact I think they feel better. It's the internal shakiness and instability in the legs that's kind of got me concerned. It seems to vary week to week. So what is it that I am taking or not taking to cause this?

I asked my neuro for serum tests on a few other vits/minerals which I will have done in a few weeks. I checked out the lab per the link that was sent to me, and we do not have such a lab near here. The best I can do for now is to get some information from the local labs through regular serum tests. I think that anything that shows abnormal is a good start over not having the tests done at all.
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Old 03-12-2011, 05:37 PM #7
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keep in mind that a metabolic issue will not concentrate in the legs.

Most metabolic issues are more global.

If your symptoms are mostly in the legs, I'd look to the spine and compressions that may be there.

Also do not assume that your thyroid medication is working properly....it might need some fine tuning.

If you can, get a fasting insulin test...to see if you are insulin resistant. When insulin can not get glucose into muscles they do get weak feeling. Elevated insulin is the first sign of insulin resistance and impaired glucose tolerance. It is a better predictor than fasting glucose tests.

Sometimes there are no answers in the beginning. It may take time to find out what is causing your problems. Osteopenia in a male of your age is just not common. I'd focus on that for now.
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Old 03-13-2011, 07:31 PM #8
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PNGUY,

So ive been around here since November when my symtoms started rather suddenly after a lot of sports. Tingling in hand, zapping in foot, muscle twitching, heart palpatations, etc. Im 31 and male by the way.

About a month ago, after 5 doctors and waxing and waning symptoms a new neuro ran some test and said my B6 was high and the probably cause of my symptoms. It had never occured to me that a simple multi vitamin could cause this. I was skeptical and posted on this board the same thing you are.

Well i stopped all supplements and have noticed steady improvement of my symptoms since. In this past month ive had a lot of time to think about my symptoms. Well when this all started i stopped all vitamins, 5 weeks later felt better for 3-4 days and then symptoms came back. Guess what i started doing right around that time... TAKING MY VITAMINS!!

Stupidly i didnt put 2 and 2 together and continued taking the vitamins and saw my symptoms get worse and worse. Luckily i wasnt taking the B-Complex daily or it would have been horrible. Now 1 month post vitamins and im feeling better enough (although long ways to go) to say the vitamins most likely were the cause.

I should also mention ive found other people with the exact same symptoms and dx. Even one lady that was taking the same vitamins Emergen-C.

Whose to say its purely the B6 or something else. All i know is im only going to take supplement when i know my body needs them for now on. Hopefully i can make a full recovery... If i were you id definately drop the B6 for a while.

Steve
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Old 03-13-2011, 10:05 PM #9
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Default I've no desire to usurp Mrs D's knowledge? But.. B-6

Can and does cause complications. My own experience was in trying lots of supplements? And it seemed that many [too many?] just added an extra boost of B-6 to what ever it is I wanted... I changed to pre-natal vitamines that avoid the OD of B-6 and am doing better for the change in just that multi vitamin..
Here is something from the NIH about B-6 overdoses...
http://ods.od.nih.gov/factsheets/vitaminb6
I believe it's pretty comprehensive... use it well. As a guideline?
Lood for copies of your tests, Ask, or DEMAND them? But they can be soo useful in learning how well your body is taking in what ever you are putting into it... Look for the ****** after any test results [meaning too high or too low] they are flags for you. Some you can do for yourself with supplements? Others mite not be so easy to assess. Good luck in this project. Because it CAN be a project!
Do not give up! Keep asking pesky questions... how else are we ALL to get any answers at all?
And, Don't forget, some of us have 'canes'? Weapons of sorts... Never use them, but the thought of it at times is soooo.... wonderful? Granted, I love my own docs, but at times? I'd like to expect them to come into an exam room with crash helmets incase we get 'testy'!
Keep faith in yourself and keep AT IT! - !!!!!'s - j
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Old 03-14-2011, 05:32 AM #10
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Here is a good summation about B6.

http://en.wikipedia.org/wiki/Vitamin_B6

When B6 builds up in a person, it is thought to be a result of poor conversion of pyridoxine to pyridoxal. This is mediated by riboflavin B2. If B2 is low then pyridoxal kinase cannot perform this task. So a person is actually "low" in active form and high in unconverted. Serum tests do not separate out this factor.

There has been a study on autistic patients showing that when NO supplements are taken, these patients show high serum levels or B6, just from food intake alone. Problems with conversion to active forms are suggested as an explanation for this.

Vitamin and mineral serum testing is rather confusing to doctors, who often do not interpret the results correctly. Very low levels are obvious and indicate deficiency, but normal or highs do not always reflect anything. Actual medical reports of B6 toxicity have been very few in number and have involved very high intakes, as the Wiki article states. There are unfortunately no lab ranges for people who take supplements listed. So anything you consume will test in a high range, most likely. I have yet to see lab ranges correlated with toxicities or intake. Most physicians just use symptoms to guide them.

However, just taking high doses of anything willy nilly, because of advertising or whatever, is not a good idea IMO. If you are not deficient, why bother? Emergen-C has alot of Vitamin C in it. That alone can cause problems in some people. It will change the pH of the urine, and affect all kinds of excretory needs. If that person is taking some RX drugs,it can delay excretion of them depending on the pH required for that task. High dose Vit C may also induce temporary acidosis in the blood, which then goes on to be neutralized by your buffering system. It has been shown that acidic conditions are present in pain situations. So the acid may be the trigger and not the B6 at all.

http://www.losethebackpain.com/treat...lsandpain.html

Here is a link explaining "pain":
http://www.spineuniverse.com/conditi...uropathic-pain

This has some nice graphics:
http://hubpages.com/hub/Physiology-of-pain
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Last edited by mrsD; 03-14-2011 at 06:03 AM. Reason: adding links
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