[Kaybaby]

Mrs D,

I recently posted my B12 results. I have since been to my neuro and he wants me to take B12 event though it is high, he said my binding B12 was low and that it why I need to supplement. I had been off B12 for weeks when I tested.

Is it ok to take B12?

Thank so much, very confused for sure.

Kay

VIT B12 BINDING CAPACITY, UNSAT (TRANSCOBALAMIN)
601 L Range 650-1340 (pg/mL)

VITAMIN B12
1189 H Range 200-1100 (pg/mL)

METHYLMALONIC ACID, GC/MS/MS
110 Range 87-318 (nmol/L)

[mrsD]

B12 is really easy to tolerate. The only concern it has for high dose is for people with a rare blood condition called polycythemia vera.

If your doctor told you to do this, I'd do it. Just do it with methylcobalamin form. If you suspect a genetic problem, like the MTHFR mutations, then I'd add methylfolate to your supplements.
You can get tested to see if you have this mutation...it is turning out to be fairly common.

[Nervous]

My recent B12 result was:

Vitamin B12 Binding Capacity 151 pg/mL Range: 650 - 1340 pg/mL

I don't know what this means. Never heard of "binding capacity." Been taking Jarrow B12 on an empty stomach. Big doses (1,000-10,000 mcg). My last B12 was nice and high, near 1000 if I recall. Puzzled. Am I all of a sudden not absorbing B12? My doctor is concerned because I am mildly anemic, as follows:

WBC 7.6 Thousand/uL 3.8 - 10.8 Thousand/uL
RBC 3.71 Million/uL 4.20 - 5.80 Million/uL
Hemoglobin 11.9 g/dL 13.2 - 17.1 g/dL
Hematocrit 35.2 % 38.5 - 50.0 %


Not doing too well today because I just had (unrelated) surgery on my arm. I'd be grateful if someone could explain. Thanks.

[mrsD]

Originally Posted by Nervous

My recent B12 result was:

Vitamin B12 Binding Capacity 151 pg/mL Range: 650 - 1340 pg/mL

I don't know what this means. Never heard of "binding capacity." Been taking Jarrow B12 on an empty stomach. Big doses (1,000-10,000 mcg). My last B12 was nice and high, near 1000 if I recall. Puzzled. Am I all of a sudden not absorbing B12? My doctor is concerned because I am mildly anemic, as follows:

WBC 7.6 Thousand/uL 3.8 - 10.8 Thousand/uL
RBC 3.71 Million/uL 4.20 - 5.80 Million/uL
Hemoglobin 11.9 g/dL 13.2 - 17.1 g/dL
Hematocrit 35.2 % 38.5 - 50.0 %


Not doing too well today because I just had (unrelated) surgery on my arm. I'd be grateful if someone could explain. Thanks.

Do you have the MCV level? Is it high normal or out of range high?

You could get an MMA test and/or homocysteine to see if your
test was accurate. A low MMA and high homocytestine would indicate that your body is not using B12 properly.

Labs do make mistakes.

Since you are looking at a possible low level, and anemia, get a copper level run too. Low copper leads to anemia.

[Nervous]

MCV 94.9 fL 80.0 - 100.0 fL
Folate >24.0 ng/mL

My doctor wanted me to come in for a B12 shot, then changed his mind and decided to get a redo on the test first. He keeps sending me to QuestDiagnostics for the blood draw and the tests. I don't like QuestDiagnostics, so I'm thinking of getting a new doctor.

[MelodyL]

Originally Posted by mrsD

Do you have the MCV level? Is it high normal or out of range high?

You could get an MMA test and/or homocysteine to see if your
test was accurate. A low MMA and high homocytestine would indicate that your body is not using B12 properly.

Labs do make mistakes.

Since you are looking at a possible low level, and anemia, get a copper level run too. Low copper leads to anemia.

Hi Mrs. D. Got a good one for you.

First, about my visit to a brand new podiatrist (who didn't kill me and my ingrown toenails). My former podiatrist used this drill and drilled into the corners of all my toenails and I jumped out of the chair (the pain was horrible). I screamed and he said "I'm not a spa" This was a dig to me because I used to go to get my feet done at the local nail salon and they always did a super job but my ingrown was bothering me so I went to him. Never went back.

So I had been going to the same person for my ingrowns for 6 months. Every two weeks. She made my feet fantastic, never had a problem.

But.....she quit three weeks ago and I won't let anyone else near me so I went to this new podiatrist.

He was wonderful, said my feet were in great shape for someone with diabetes for 28 years and had been diagnosed with neuropathy 10 years ago. He did his neuropathy test on me "do I feel this sharp or dull", etc. etc. He took my pulse in my ankle....etc. I did just fine. He said I should keep walking and I said 'no problem"

I told him about Alan and his journey with his neuropathy problem and the guy shook his head and said "that's a tough nut to crack".

Then I told him about my use of Methyl B-12 every day and he had this gleam in his eye and this big smile on his face and his exact words were "THAT STUFF IS MAGIC ISN'T IT???"

So I'm on the good road in keeping my neuropathy controlled, thank god for that.

Now here's what I want to run by you. The other night at Dunkin Donuts my friend's 59 year old daughter (beautiful woman, looks half her age, not overweight, holds a job) and we were talking and I mentioned neuropathy and she blurts out 'Oh I have neuropathy?"

I looked at her (I know her for 3 years now, and never knew this)

I said "You have neuropathy? Were you actually diagnosed?" She said "Oh yes, he did the filament test, and all the tests"

I said 'are you diabetic?" She said "no, that's the strange thing, they don't know why I have it, and I only get it in the winter, not the summer and in the winter my toes are completely numb".

I questioned her further and she replied that she does not get the zips and zaps that Alan and others get, it's just that her toes are completely numb when it's cold outside.

Then she further said "I have nodules on the bottom of my feet". I said "Can't the doctor remove them?" She said "He refused and he said "I'm not touching thses, because there are nerved involved and tendons and god forbid I touch the wrong thing........."

She also has psoriasis in various parts of her body (for a long long time). She wears things to cover it up and her doctor puts some kind of cortizone tape on her hands. Never heard of that one. I told her about Alan's acupuncturist and his thoughts on people coming down with these ailments and he thinks that everyone had the Epstein Barr Virus some time ago and that something triggered something in the body and these people came down with various conditions.

She said OMG, that's what my doctor said, he said I got this from shock". I said "what shocked you?" She said "My friend committed suicide'. I just looked at her. I said 'I'm so sorry".

Anyway, just wanted to share what I just found out.

Take care,

Melody

[nashmax]

First of all, thank you Mrs D and others who are there to support and help people seeking answers to their sickness. I started following this thread last week, while searching for diagnosis of my symtoms. I hope someone esp Mrs D would be able to help me here.
I am 38 years old female and have most of the symptoms related to Vit B12, but problem is before my blood test, I already started taking 5000 mcg, methylcobalamine and my test showed higher number ( B 12 - 1142), MMA came back normal. Is it possible with 3 days of supplementation, MMA levels come down? or should I rule out it B 12 deficiency at all?
My major symptoms- numbness and tingling (face, arm, hand, legs), fatigue, lightheadedness, heart palpitations with heavy pulse everywhere else, flu like symptoms, sensitivity to cold, feel feverish, headache, my feet are always cold, chronic constipation (thats a life time problem).
My blood test showed - I am pre diabetic, slight low MCH, MCV AND slight high- RDW, ESR- 31MM/HG.
I have always been prone to getting sick all my life, but these symptoms for last 2 months has made me almost disabled. I don't get all the symptoms everyday, some remain for couple of days, and then others take turn, keeping me sick constantly. plz help and suggest. Thanks in advance.

[F_ward]

I have read through this thread with great interest after having just been diagnosed with idiopathic neuropathy. My neurologist has ruled out many major things and essentially arrived at a diagnosis of IPN. I have had symptoms for a while now, at least a year, tingling and burning feet that came and went but now its a bit more constant on a day to day basis. I also am just noticing it in my hands a bit. I have no idea how I got this but will list a few bits of information including

Hashimotos diagnosed 2012 confirmed via ultrasound in 2015. No antibodies detected though. Been on thyroxine since then 2012. Currently stopping it for six weeks to see where im at on advice from neuro. I was getting some hyper symptoms.

Took norfloxacin antibiotics for diverticulitis about 18months ago. I also get ibs from time to time and have had chronic gatritis on and off.

Im not a diabetic and have generally good health.

The neuro dismissed vitamin b12 as a possible issue. But I'm not so ready to discount it.

Last test it was 449 pmol/L but I had been taking some tablets (not methyl) the week i got bloods taken. Serum folate was 34nmol/L. I'm mildly anaemic in terms of hematocrit and hemoglobin but those numbers bounce around between normal and low. I used to think this was from doing a lot of endurance sports (cycling) but I stopped that because of persistent pudendal nerve pain and still seem to have it a bit.

I have ordered some methyl b12 from the states because its hard to find here in Australia. Havent taken it yet though. Id like to be systematic about things I try when investigating things further but i'd like to hear what others might think of these numbers?

I also run low on serum sodium 135 and on lower side for potassium 3.7. Mag supplements have never really helped me at all.

Putting this all togther, pudendal nerve irritation, plus the peripheral neuropathy I was considering trying the methyl B12 for a few months? Might just be in the denial stage but I'm just not ready to rest on a diagnosis of "idiopathic" and a diet of Lyrica, which leaves me pain free but cognitively impaired...

Thanks
Fred

[mrsD]

Welcome to NeuroTalk:
Your Floxin antibiotic is a member of the fluoroquinolone antibiotics, and they are known causers of neuropathy.

Here is a post about it:
http://neurotalk.psychcentral.com/post661103-2.html

As time passes, more and more people show up on the net searching for this topic. Today there are many more sites you can find on Google about the damage fluoroquinolones cause.

Low electrolytes like sodium and potassium do happen with kidney disease. So you need testing to see if they remain low or were just low that one testing time.

The B12 can't hurt, so I would stay on the methyl form for a while. Beginning low B12 does show up in CBC blood testing as a high or borderline high MCV result.

[Dubinin]

Ah yes. Thank you for the validation.

When I was here some time back, I was shot down for mentioning this B12 cohort in PN therapy. Remember? I was told "B1 and only B1 all the way, baby." No. I also did my research, as I have no plans of being a cripple. Now everybody and every snake oiler is selling the B12 hypothesis. Haha. No loneliness is there, in being avant garde.

However, B12 will be of limited use, unless it is specifically indicated. I mean, get homocysteine (HCY) level and methylmalonic acid (MMA) levels checked, else false Puck the Phlebotomist is proven to be.

Also, if you are taking high B9, (folate/folic acid) you will mask B12 deficiency - it wont show. BUT you will continue to worsen your condition -- IFF B12 is indicated as a reason for it.

But, please allow me to post about my recent findings elsewhere, for the good of whoever may benefit.