1. < Chronic Pain

Body making too much Vitamin B6

Posted by granolamama @granolamama, Feb 15, 2019

I had many labs done this week in an attempt to figure out why I am dealing with chronic muscle and joint pain, and severe exhaustion and weakness. The results came back showing that my B6 (normal range is 2-20) is 116. I do take one supplement each evening, and my doctor said it’s far less than she even takes, and in no way would account for such a number. She is completely confused, saying she has never seen such a thing, and couldn’t even come up with any info on it. She will spend some time meeting with other doctors this weekend to brain storm.
I’m wondering if anyone has experienced this, or has any info. I am googling like a mad woman, and the only info I can find is about people taking too much B6 in supplement form, and the dangers of it in their system. Nothing whatsoever about a person’s body making too much. Ideas?

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bobweller | @bobweller | Jan 25 4:05pm
In reply to @kerri143 "God bless you you've had one liver transplant and another I'm suffering from cirrhosis but I..." + (show)
@kerri143

God bless you you've had one liver transplant and another I'm suffering from cirrhosis but I have so many other illnesses I don't think I'm eligible I'm terrified my doctor just ignored me you know waited forever I never knew what fatty liver was so right now I'm at stage 4 fibrosis from the MRI and the elastiography results basically starting stage one cirrhosis I haven't had a biopsy yet and I'm terrified I know this has nothing to do with B6 all I know is I've had high B12 and they said it was because of my liver or kidneys I don't know if that relates to B6 but I was taking a supplement anyway now I'm facing blood work because my hemoglobin is high and worried about that because High irons hard on your liver I just want to say that's amazing I don't know how old you are I'm 47 but I don't even buy doctor doesn't even talk about it this is my second doctor and I just was approved for the new medication they approved in March in the FDA for cirrhosis and and then I was approved but they will not give it to me until I get a biopsy which I'm afraid of because right now my diabetes you know I gave up at one point and I really damaged myself with leaving my sugar at 500 because I felt so weak you know I was eating food and I the meds were causing me lots of skin problems and even more constipation and I also had adrenal insufficiency before where my sugars were dropping anyway it traumatized me being unconscious and then being so hungry that I didn't care you know between congestive heart failure which has not been active in 10 years I have high blood pressure so far you know I had a stroke and a tumor in my brain I just saw the neurologist and that's looking good but now I have no reflexes in my legs cuz I've been in bed for 4 years since Colvin I'm sorry I just I'm I feel for you and it's so hard you know I've gotten a lot of people help cuz you have to ask to be tested for vitamin D and b12 they don't just test for it I know so many that were low that that I helped with that and how to talk to doctors and read blood work and all of that because so many doctors will tell you everything's fine when I've had dangerously low sodium and many things cuz my body doesn't produce high fevers or barely a fever at all when I'm sick so I've been ignored and nearly died from infections because I don't have a fever my body just is backwards not to mention was it showed that I tested positive for Sjogren's but I don't have the symptoms of Sjogren's however I wish I knew back then when I know now you know I was very heavy at one time and had been told I had fatty liver when I had pneumonia but I didn't have any symptoms until I got covered that's when I had to go on laxatives and my stools just started getting worse looking they blamed it on my weight and not to mention put me on steroids because they misdiagnosed me gained 60 lb in 2 months it's taking me 2 years to lose 70 lb but now I have no muscles in my legs or reflexes because of the diabetes and cirrhosis and not being active anyway I'm sorry this is probably way too long but God bless you I was wondering how to go about the requirements for getting a liver transplant and how bad you have to be what stage of cirrhosis I wish I had the answers for you about B6 I know I've been studying a lot I was suffering convulsions because they couldn't after 16 minutes figure out that I interstitial pneumonia where you don't cough so it's harder to detect I guess and I was not going the bathroom and then stopped urinating because of being on Metformin in combination with a mood stabilizer / seizure mad which I've never had seizures but it caused toxic levels which cause acute kidney failure and high lactic acid where I wasn't having full seizures but I spent 16 times to the ER I did not give up to finally I got put on antibiotics taking off the other Med and I have not had this half convulsion where I wasn't completely unconscious I used to work with people with seizures so I know what like a full seizure looks like people thought I was faking but it wasn't till you know right after covid that's when my liver I knew took a turn for the worst and I've been trying so hard to find a better gastroenterologist but maybe I need to just look for a hepatologist I'm scared because I've had seems like a fungal infection where the bottoms of my feet are yellow but my eyes aren't my skin isn't I'm just really scared sorry to bother you I'm praying that you will find your results and get better I'm really impressed that you been able to go through these transplants

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I am.so sorry you feel like you do.

Fatty liver is a good diagnosis for an organ transplant. Sounds like you are struggling with doctors. I found out at 44 I was dieing. Had Hep C and could figure how I got it. Plus it was an odd genotype so doctors said they could not cure it before I had surgery. After a hugh physical and mental exam I was accepted onto UNOS transplant list. The hep was not cured for another 16 years after my 1st TP. The liver was shot after 17 years so I received another one. I was not expecting this at all!

You need to find a good Heptologist that handles transplants. UNOS is the organization thar manages transplants for all transplant centers. You need to read through: https://unos.org

There are over 250 transplant centers in the US.. OPTN is another site to read and understand: https://optn.transplant.hrsa.gov/data/

Once a hospital center accepts you into their TP program, there is another organization that gets involved. This is the Organ Procurement Organization: There are over 50 in the US and they will coordinate the organ acquisition, harvesting, and distribution:
https://aopo.org
You need to:
1. Get a referral to.a transplant center.
2. Get a qualifying exam by this center.
3. Get listed on the National Transplant List.

Hope this helps. It's a complex process.

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redthrun16 | @redthrun16 | Feb 1 7:39am
In reply to @carolinlv "I do not drink energy drinks of any type. I drink water. I’m 72 years old..." + (show)
@carolinlv

I do not drink energy drinks of any type. I drink water. I’m 72 years old and six months ago, an endoscopy showed an ulcer so I’ve been on an even more basic diet for that. My diet was already pretty basic, as I’m trying to get my gastrointestinal system right through foods. my body really doesn’t love medication and if there is a side effect to be had, I will have it. I don’t eat red meat, I eat a little chicken, but honestly, I’m so weary of it I don’t eat much of that either. I live in Nevada, so finding good fish is close to impossible, so that’s a no also. For a while I was eating a lot of tuna, but I got tired of that, too. I take no supplements at all. I take one blood pressure medication and one statin and that’s it. So it seems that wherever I am getting vitamin B6, my body wants to store it for some reason. Does that sound like reasonable thinking?

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My number is 28.7 which is extremely high, and I have never taken a b vitamin in my life

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lorien | @lorien | Feb 22 3:57pm

In Dec 2023 I had blood tests done as I had been experiencing chronic pain for many years and developed further unexplained pain, numbness and other unpleasant symptoms. My B6 was 230 (nmol/L) and the reference range was 20-190. My Dr insisted I must be supplementing in some way but I wasn’t taking anything other than my thyroxine and blood pressure meds.

I made a concerted effort to avoid B6 and was retested again in Feb 2024 and my B6 level had increased to 390. I then discovered that ironically, a supplement I had started taking after the original blood test (Magnesium) had hidden B6 (fine print) so I stopped that and hoped for the best.

In Oct 2024 I was tested again and my level was 96 so I thought I’d sorted it out. My symptoms had also eased significantly and I was feeling much better.

My symptoms became bad again so I retested and my level is back up to 220!! I don’t understand how this is happening!

I have not taken any supplements since I stopped the Magnesium in Feb 2024. I have checked for other hidden sources (eg fortified foods/drinks) and eat a healthy diet of mostly organic veggies and free range meats.

I found this page today and also found a website called “Understanding B6 Toxicity” and thought I’d share it as no one else has mentioned it so far and it might be of some help. As a new member I am not allowed to share the link but you can Google it if you are interested.

They mention dehydration as a potential factor - which is very relevant for me. I have always had trouble staying hydrated and never really took it seriously.

Anyway, I wish you all well and I hope this information is of some help.

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lynnbutcher | @lynnbutcher | Mar 25 9:30am

I have been dealing with this for years. What no one is talking about is the mood changes it causes. I also believe that it has everything to do with Fibromyalgia/Chronic Fatigue. I went to a functional medicine practitioner and she prescribed me 5http. Worsened my symptoms of fibromyalgia and I actually felt suicidal. In two days that feeling went away. I tried taking vitamin B6 another time...not a good idea! We write all of this on a reputable Medical Clinic and all we get is "are you drinking too many energy drinks". Somehow this is not being studied. I pray that someday someone listens to us writing on here.

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smithacl | @smithacl | Apr 8 1:12am
In reply to @mdamiani57 "I guess it might be but I've noticed a lot of drinks now are loaded with..." + (show)
@mdamiani57

I guess it might be but I've noticed a lot of drinks now are loaded with vitamins but B vitamins should be water soluble and come out in the urine. But maybe we have a kidney issue where it's just not filtering enough of the extra B vitamins? or it's the food we eat. But I did notice some strange after effects from COVID as well. I also now have strange nerve things where I'll scratch my leg and I'll feel a nerve tingle on my stomach always in different areas very strange the Neurologist said it was probably from diabetes but didn't sound like he could say for certain. but anyway just dealing with it the best I can. Good luck moving forward.

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Just checking that people have been directed to the Understanding B6 toxicity from a Western medical perspective website? It is highly informative and has a protocol that leads to slow healing. The symptoms here all match exactly what the site lays out. Well worth checking

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smithacl | @smithacl | Apr 8 2:31am
In reply to @hapamomlv "That's exactly what I'm going through, thank you." + (show)
@hapamomlv

That's exactly what I'm going through, thank you.

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If you haven’t already, do check out the “Understanding B6 toxicity” website (it is western medicine based and you will find many accounts like yours and protocols for gradual healing. Very helpful.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Apr 8 12:23pm
In reply to @bobweller "Check out link: https://understandingb6toxicity.com/healing/the-b6t-logic-for-healing/remove-b6-from-nerve-tissue/#:~:text=We know from Coburn's 2015 study that the only way,too many nerves at..." + (show)
@bobweller

Check out link:

https://understandingb6toxicity.com/healing/the-b6t-logic-for-healing/remove-b6-from-nerve-tissue/#:~:text=We know from Coburn's 2015 study that the only way,too many nerves at once.

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Now that this discussion has revived, look at this analysis from the NIH of several B6 studies.
https://pmc.ncbi.nlm.nih.gov/articles/PMC8483950/
The issue is a lot more complicated than was earlier thought, and it appears that when we think our body is producing too much Vitamin B6, it may in reality not be synthesizing/releasing it efficiently. So even without excessive B6 from supplements or fortified foods, one can have a high serum level.

It is still unclear what percentage of neuropathy cases may be caused or exacerbated by high levels of vitamin B6

I haven't studied the Coburn site and report, but since B6 is water soluble, the hydration approach is probably on the right track, and adding exercise to our daily routine is pretty much always a healthy suggestion...

Just know that any claims of other supplements or medications to reduce B6 have not been studied.

Has anyone tried the RDAB^ Protocol? What was your experience?>

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