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-   -   STICKY - The Vitamin B12 Thread: (https://www.neurotalk.org/peripheral-neuropathy/85103-sticky-vitamin-b12-thread.html)

MelodyL 06-10-2016 04:31 PM

Quote:

Originally Posted by mrsD (Post 1213824)
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

Nervous 07-07-2016 09:50 PM

I did a couple of searches in this thread and was not able to find what I am looking for — probably because I am not very good at writing the correct search terms — so I'll ask a question.

I am recently diagnosed with pernicious anemia. With regard to sublingual B12, I'd like to hear what products others are using and how well they are working. I have some Jarrow Methyl B12 1,000 mcg, but I wonder if there is another form (liquid or powder) that would be better than the tablets, which, by the way, take a long time to dissolve under the tongue.

Thanks. :)

kiwi33 07-07-2016 11:02 PM

Hi Nervous

The information here might help you to ask your health care team informed questions about pernicious anaemia, including treatment options What Is Pernicious Anemia? - NHLBI, NIH.

Nervous 07-07-2016 11:08 PM

Quote:

Originally Posted by kiwi33 (Post 1216416)
Hi Nervous

The information here might help you to ask your health care team informed questions about pernicious anaemia, including treatment options What Is Pernicious Anemia? - NHLBI, NIH.

Already bookmarked that one, but thank you, Kiwi. :)

mrsD 07-08-2016 06:46 AM

Quote:

Originally Posted by Nervous (Post 1216402)
I did a couple of searches in this thread and was not able to find what I am looking for — probably because I am not very good at writing the correct search terms — so I'll ask a question.

I am recently diagnosed with pernicious anemia. With regard to sublingual B12, I'd like to hear what products others are using and how well they are working. I have some Jarrow Methyl B12 1,000 mcg, but I wonder if there is another form (liquid or powder) that would be better than the tablets, which, by the way, take a long time to dissolve under the tongue.

Thanks. :)

Sublingual does not work well. Chew them up and swallow
followed with water. Take only on an empty stomach, as food will bind B12's micrograms and prevent absorption.

A study was done with B12, orally for both normal volunteers and those with pernicious anemia and similar absorption occurred in both groups when used on an empty stomach. (no food for an hour after.)
PubMed Central, Table 1: Blood. 28 Sep 15; 112(6): 2214–2221. Prepublished online 28 Jul 7. doi: 1.1182/blood-28-3-4253

The abbreviation on the table is PA = pernicious anemia.

If one is taking B12 orally, you need to follow the protocol, so as to get aborption. If I were you I'd take 5000mcg (5mg) once a day until you improve. You could back down to 1 or 2mg after that if you take it properly. Also don't bother with cyano...use methylcobalamin which is already active in the body.

Nervous 07-08-2016 10:58 AM

mrsD, I know that you know what the definition of pernicious anemia is, but, for my own peace of mind, let me include this information: My recent Intrinsic Factor Blocking ab test was positive. If this is the case, then how can I absorb B12 through the digestive tract?

Sorry if this question is too science-y. :)

mrsD 07-08-2016 11:36 AM

The way intrinsic factor works is to take the 1 or 2 micrograms broken out of protein from animal sources. It is such a minute amount the intrinsic factor complexes the B12 and holds it so it cannot get lost in the GI tract amongst the food there.

When you take oral supplements there is a huge dose present
(sometimes more that 1000x that of food) so if the food is not present in the GI tract at that time, the B12 is able to passively pass thru the GI membranes and get into the blood.
If transcobalamin is working there, it snaps up the B12 and carries it around in the blood until releasing it in tissues.

It is known now that the mouth membranes are too small to get much B12 into the blood that way; B12 is a huge molecule and chemically can't get thru well that way.

The link to the table I gave you here shows that B12 can orally work and therefore explains it clearly.

Nervous 07-08-2016 12:42 PM

Thanks, again, mrsD.

If I understand you correctly, you are implying that I only need intrinsic factor to derive B12 from food. If I take the Jarrow Methyl B12 on an empty stomach, I can absorb the B12 whether or not intrinsic factor is present. Is that right?

mrsD 07-08-2016 02:47 PM

yes, that is correct. The huge dose of oral B12 makes up for absence of intrinsic factor. Oral absorption is not all that dose by far, as that table found 13 micrograms were absorbed in that test with 1000mcg dose. So you should take the oral form daily, on an empty stomach.

Nervous 08-14-2016 03:05 PM

B12 Test Results

5/31/16: 151 pg/mL (Standard Range: 650-1340)

8/4/16: 1781 pg/mL (Standard Range: 211-911)


From 6/21/16 to now, my doctor has been giving me 1000mcg B12 injections every other week. In addition, I have been taking B12 orally (even though my doctor says that I cannot absorb it due to no intrinsic factor).

Question 1: How much is enough?

Question 2: How much is too much?

Doctor says I will have to be on B12 injections for the rest of my life. If so, I'm going to learn how to inject myself. People do this, right?

Thanks, all. :)


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