Looking for people who have high levels of B6 trigger neuropathy.

Stopping supplements will get the B6 out of your blood but not muscles and nerves. You have to deprive it by eating only RDA of B6, which is not easy to do. And hydrating. And exercising. It takes a long time unfortunately.

Yes, it was on this connection I learned about the B6 “ journey” to muscles and nerve cell. Getting better hydrated and exercising are both doable goals . I’ve got more challenging work to go over and implement the diet.
When I discovered my high levels of B6 ( 76), it came with GI issues. Unfortunately, the only food that were easy on my gut and tolerable, were also high in B6. Doctors insisted foods wouldn’t make a difference. I had already lost 40 lbs and didn’t want to lose more. My GI doc suggested a low FOD diet. It sounds like I will need to learn on my own , using the B6 guide I found through this connection.
I shared with doctors, but they tend to ignore information without lots of research.

I am so grateful for your excellent research.

It’s comforting to have a group share, learn from and to relate.
It has been discouraging dealing with doctors that lack knowledge in this area. Worse yet, it’s discouraging that they aren’t open to learn.

In some ways the lack of enthusiasm among the medical world is understandable. There is almost too much to learn given the diversity of people and the diversity of diseases. I plan on my next visit to be more straight forward about what I expect. ie, I need physical therapy to deal with peripheral neuropathy, can you recommend a place? I need to find a pain doctor to help me deal with the pain of peripheral disease, can you recommend one? By narrowing my requests to my GP it should help him to steer me in the direction I need. One specialist that has been very helpful is a podiatrist. I can not bend down to take care of my feet and toenails and my legs cannot bend to accomodate a pedicurist chair. With a doctor's referal Medicare covers 80% and the podiatrist not only gets the feet in good order he understands periperal neurology as it affects the ankles and feet.

I have a question about the blood testing for B6 and diet. I am thinking that is high likelihood that my symptoms, at least in part, are due to high B6. I hunted down the supplements I was taking that contained B6, and stopped them all. I also have cut back on my high B6 foods intake (with the help of the Cronometer app, free version). So I did started this effort to reduce B6 about 2 weeks ago. My doctor just ordered a B6 blood test yesterday, and I won't be able to have the test until sometime next week. So will my blood still contain the same level of B6 when I am tested, or will it have gone down because of my stopping the supplements and many of the foods I was eating? That is, I really don't know, how long would it take for B6 levels to go down?

I would be very interested in knowing how making those changes affect your blood levels,
My symptoms of high B6 levels were evident when blood level was 72. That was 2 years ago. I cut down, but did not eliminate B6 at that time, in supplement and foods. It took me . It took about 7 months of B6 gradually going down to normal. Neuropathy remained, of course.
A couple of months ago, I felt symptoms were returning, had blood tested, and levels had increased to 32. That’s when I felt compelled to learn more and joined this group, I changed to supplement with no B6. I am about to work on diet using tool you mentioned. I worry about how those changes might upset my GI system, as the foods that help it stay steady, are the very ones that are high B6. It’s worth a slow try, then retest of blood in a month.
Please report back on the results of your efforts. I hope it is successful and would inspire me to keep on trying,

Good suggestions. I agree about podiatrist. Mine is a gem and makes me feel understood and well taken care of.

Once you stop supplement even if you eat normal balanced diet your b6 level will drop. I had 5x normal from taking 20mg nightly that was included in melatonin for 2+ years. In 5 weeks my b6 levels were bk to normal and have stayed normal for past 4 years eating balanced diet. The PN in my feet has gradually progressed in those 4 years. A blood test now most likely will not tell you much about levels while supplementing.

"Lack of enthusiasm among the medical world? Nope-rather total incompetence...especially if you are on Medicare! It's understandable...they are swamped!.. Three years ago after my neurologist kicked me out I ended up with a podiatrist who diagnosed me with small fiber neuropathy and put me on Gababentin at no avail.. both my feet and legs were burning, needles and pricks, pain, tightness, and numbness...
Finally I ended up with a pain institute who did Sanexas treatment twice/week along with B12 shots straight in my feet for three month...sure enough I'm healed and keep doing Sanexas only twice a month for maintenance...
There are competent medical professionals out there...only you have to find them out...