[Geraldine]

For a long time I've been questioning my B12 levels. I have taken vitamins, stopped them, started them again, stopped them, and it keeps going...

Back in June I got tested. My B12 levels came back as HIGH. My number was over 1300. At the time, I had been using a whole food vitamin and probably taking sublinguals at the same time. So I stopped taking them.

In July I had my wisdom teeth removed and took amoxocillin. Afterward I got an ingrown toenail and started feeling pain in my second toenails. I stopped other meds, and had already stopped vitamins.

In October I was diagnosed with morton's neuroma. I was getting married and couldn't walk right in my shoes. In November I started getting numb feet. I was diagnosed with neuropathy. I started taking my*vitamins again. And I started seeing a hormone doctor.

In December, On Christmas Day, I received a vitamin B complex injection. My neuropathy got better over the next few weeks. In January I had a bunch of blood tests. My vit B12 (on the same scale as the past June) was at 601. So... June 2011 it was over 1300, 1329 to be exact. July after my tooth surgery I started feeling things... After my injection I felt somewhat better. In January my level was at 601. I had also been using my sublinguals again, and had discontinued those maybe a week before the test. That is a pretty big drop isn't it... from over 1300 to 600 in half a year? And I had recently had an injection and been taking sublinguals. I am thinking I might have been very low, after the surgery and bad diet, and the injection and oral vits increased the number for a short while. After I stopped the vits for the test, I didn't start taking them again. And the numbness returned after a while. So I've started the methyl B12 sublinguals the past couple weeks. My mouth has also started, since late Jan., to be sore, and that has increased through Feb and March, only to get an increasingly sore tongue/mouth. (Have read that low B12 and something about B6 could cause this).

I also have felt that I might not absorb B6 well. I recently had a test for that but do not have the results. I am calling tomorrow for those results. Whenever I take B6 I seem to feel worse. I continue to suspect the B vits. I know I have an autoimmune disorder, but I don't know HOW it could cause every one of my problems when those blood tests seem to show it is not currently active (my rheum says according to my tests it is not very active?)

One more thing...I have had recent blood tests since this past summer that show my white and red blood cells plus my hematocrit and my total lymphocytes are low... suggesting anemia? But my hemoglobin is normal. Before these past two tests, my levels were normal range (although low normal range). But this past couple tests they have been low, I am wondering now if this is pernicious anemia and I am not absorbing things correctly, especially the vit Bs. I was told yes, I show anemia, but nothing was made of it and I wasn't told to do anything different. This might answer a whole lot of questions, am I anemic because I don't absorb vitB? And is it possible to have a high vitB12 level because of taking vitamins or maybe it's showing in your blood but is not being absorbed properly?

And am I having problems with VitB 6 at all? I don't feel well when I take the multi Vit B.

Looking forward to your comments. As I continue to sort through all this.

[mrsD]

The MCV (mean corpuscular volume) in the CBC bloodwork is elevated when B12 begins to get low.

Dropping so far in a short time, suggests that you are living off the stored B12 in your liver.

The ranges used by doctors are only averages. There will be some people who need more than others, so one person's "normal" would not be "normal" for another, with greater needs.

I really think people who don't feel right taking some vitamins should get the MTHFR DNA test to see if they can activate them properly. If they cannot, the vitamins (B6 is not included) folic acid and B12 will not work, but may show up in the serum anyway in some testing. B6 is excreted in the urine and you can see a slight greenish tinge to show it is coming out. You can't see B12 however the same way.

Pernicious anemia does not affect the white cells in a great way.
Production of red cells, yes. A global decrease in both red and white cells suggests a marrow disorder, or something wrong with the spleen. Seeing a hematologist might be a good idea.

This is a link explaining hematocrit:
http://en.wikipedia.org/wiki/Hematocrit

Some of this is getting beyond my expertise, so consulting a hematologist for explanation might be a good idea.

[judiesva]

Hello-

New to this forum and just starting testing due to numbness/tingling in both feet moving into ankles, severe muscle titching moving from lower legs to thigh, now to upper arm and eye lid. Several days ago my lips and tongue started the tingling/numbness. Will be having a nerve conduction study in 2 weeks but have a question on b12 testing. I have been taking otc b12 (5000 mcg) daily along with mulitB and folic acid. How long should I wait after stopping these vitimins to be tested for b12 deficiency?

Thanks-

[mrsD]

Taking an oral product is very efficient, especially if on an empty stomach.

You can try stopping about 5 days before, but if you have been on it a long time, your levels will reflect that and not show a "low" if that was present before the supplement.

It is unlikely you will show a deficiency in the B12. You will probably test over 1000.

[judiesva]

Thank you Mrs D-

I have a large HMO in the DC area and it's like pulling teeth to get anywhere with testing, etc. My primary cage Dr. did test for B12 1 1/2 years ago and the results were in the low 600's (while taking supplementation). She said at the last visit that "we already tested and it was good." From what I have read, there are several more tests that can be done to uncover a vit B12 deficiency. Will all the test outcomes be affected by 3-4 years of b12, folate, mulitb supplementation?

Thank you


ps-being new to this forum, I can't figure out how to find where my post went! Just found my posting and your response by chance. Have gone through the FAQ but my lack of knowledge about forum talk I guess was way below normal FAQ's! Have tried the "search" function but still working on tracking threads-

[mrsD]

We scan new members posts before they appear on the boards.
It is temporary, to block out spammers who would abuse all our members.

You'll be out of that group soon. So just be patient.

My B12 without supplements is just over 800. When I tested out the new Puritan's Pride methylB12 I tested at 1999 (the machine maximum).

If you don't convert well, the cyano form, OR if you don't take it on an empty stomach, I'd expect lower readings for you.

Cyano is still in most products, but some companies are now switching over to the active Methyl form.

So someone taking oral supplements would have to read the labels for dose (is it over 1000mcg/tablet), is it cyano?
And do you take it on an empty stomach.

Taking the right one the correct way should put you at 1000 or over for 1000mcg/day.

It superficially seems "easy" but the chemistry is quite complex in reality.

[judiesva]

Hello MrsD-

Finished my nerve conduction study this morning and was told me the neurologist that the findings indicate CMT. Well, that was a new one for me. He reviewed my file and said, WOW, you've had this going on for some time. Yes- 5 YEARS AGO I went to neurology for the same symptoms through the same HMO and nothing was done about it except to be sent to podiatry. He said my condition was carpal tunnel of the ankle. I really did not think that was the reason but gave up trying to get my HMO to do anything else. My symptoms have progressed significantly in the past year. Dr today asked if the labs were normal and I replied that five years ago my b12 was 416 (finally was able to access my online labs with my HMO). Oh that’s "normal" he said. My reply was not in some other parts of the world. Gee, he about lost it. Anyway, he would not discuss anything else, since he did not order the study, the primary care Dr. did and he would send the results to her. My question is, should I ask for updated b12 testing? And after some research, have realized that I should NOT be asking for nitrous at the dentist. Just had two dentist appt for a new crown and have used nitrous twice in the last three weeks at his office. That is when my lips started going numb. I am just really afraid that I will be labeled "CMT" and no further testing will be ordered. Any ideas? I cant tell you howl much I appreciate this forum. I have learned so much about b12 and CMT here already.

Sincerely,
Judiesva

[mrsD]

I definitely think nitrous is a big no-no for you and just about everyone else!

I'd start on 5mg oral methylB12 now, and take once a day
for 3 months and see if you have any improvement.
That should put you in a better range than you are now. At your 400 level you are at the bottom of the normal range.

Nerve entrapment in the tarsal tunnel is not the same as CMT.

For what it is worth, I have found after working several years in an HMO clinic, that the doctors there are not A rated by any means. I'd see a podiatrist after the 3 months of B12 and see what can be done. Some people get relief from release of the tarsal ligament, and others just make more scar tissue and the compression continues or worsens.

Make sure you have thyroid testing, as hypothyroid will cause tarsal tunnel compression.

[Kitt]

There is DNA testing for CMT. There are many, many types of it. Also, family history is helpful. EMG/NCV testing can be helpful as well to tell if you have either CMT1 or CMT2.

You can review "PN Tips, Resources, Supplements and other Treatments" at the top of this forum. Just go to CMT which is down around four subjects now. There is lots of information on there concerning CMT.

Hope you get an answer. There is no cure/treatment for any type of CMT at the present time. There is much research going on concerning it.

http://www.cmtausa.org/index.php?opt...d=68&Itemid=42

Nitrous oxide is listed. Too much Vitamin B6 isn't good either.

[judiesva]

Hello Mrsd and Kitt-

Thank you for your quick respones. MrsD-my primary care Dr and the neurologist yesterday both said that the finding of tarsal tunnel was incorrect. Which is what I figured 5 years ago? I have had years of dealing with different symptoms and have been tested for what seems like everything. At one point my anti-DNA was positive and drs thought I had lupus. Then a few years later is wasn’t-go figure-but I assume is a good sign! I had fertility problems in my early 30's (now 51) with "early menopause" diagnosed. I have been seeing a Dr (outside of my HMO-group called Bodylogic) that started treating me with bioidentical hormones about 3 years ago. He has been the one that has kept up with blood work over the past 3 years. During this time by crp has dropped from 3 to under 1, FSH dropped from high 2's to low 1's, and the HORRIBLE hot flashes have finally stopped. And my cholesterol has dropped-even the bad stuff!-without the use of cholesterol lowering drugs!!! I am hoping to talk with my primary care dr (HMO) regarding the nerve testing within the next couple of days. I would like her to retest for b12 issue since she has not done so for a few years.

Kitt-thank you for your awesome links! That is where I first found any info on CMT and the info on nitrous. I have accepted for years that nitro was "fine" since the Dr's were offering it. Have to have one more filling today for a tooth that has cracked and dread going without the nitro! I had also been taking b6-which I stopped several weeks ago-hoping to get primary care dr (w/HMO) to retest b issues. Is genetic testing the only way to solidify the CMT dianosis? I doubt my HMO will do it-

Thank you both-what a wonderful forum to help others