[cat265]

I went through 4 doctors before I finally (so I thought) came across one who knew, at least, somthing about b12. My first appointment with him was 2 weeks ago. He agreed my b12 at 293 was too low, especially with my symptoms. So he gave me a b12 shot told me to take b12 supplements and come back in 2 weeks for another shot. He also drew some blood and was testing for lupus and celiac. I went today, my blood work came back negative for both. He did not want to give me another shot (even though I was telling him the pains in my legs seemed worse, my vision is blurry when reading, just within the last 2 weeks, and I get dizzy). He thinks I could have pernicous anemia. He wants me to continue to take the b12 supplements and have another b12 serum done in 2 weeks, so it will be 1 month from the 1 shot I did receive. He thinks if my level dose not rise to some significant amount than I must have pernicous (or boarderline) anemia and he will set me up on maintenance shots. ??? Iam soooo confused, and mad!! How can you tell a doctor he is wrong?

[lahgarden]

Hey cat,
There are a LOT of really really smart people here, who will be able to point you in the right direction.
I'm sure they will be around shortly.

I'm in the same little boat as you.
I've taken weekly shots (1000mgs) of b12 for a year, that's how long it took my levels to go from 220 to 900.
and out of the blue
--the only change was on my good days I decided to get back into an excersice routine--
........and out of the blue they plummeted to 460.
with no explanation.

start looking into
subacute combined systems disease a.k.a. subacute combined degeneraton.
don't give up, you deserve answers.
My doc -on Long Island - was the fourth doc, (2nd neuro) to pick it up.

good luck
lah.

[rose]

Cat,

Very frustrating. Unfortunately, most often people can't educate the doctor, but fortunately in this case they can usually take care of themselves on this issue.

What dosage is the B12 you are taking orally? If it is small (for example: 3 mcg, 20 mcg, or such), your level should not increase if you have pernicious anemia (lack of intrinsic factor). At least the doc knows the difference between "pernicious anemia" and "megaloblastic anemia." And apparently the doc also knows that you could be losing the ability to produce intrinsic factor. Those are WAY more than most know.

What the doc likely does not know, is that if you are taking more than a couple hundred mcg at a time you're B12 level is likely to stay about the same or increase on the oral doses. If the doc thinks that rules out "pernicious anemia, he is wrong.

And, in addition, some people would still have more B12 due to the shot. So, the fact that he gave you a shot and now wants to use oral B12 doses to see whether you have "pernicious anemia" does not inspire confidence.

Fortunately 1000 mcg or more of methylcobalamin each day will probably be better than shots.

And I do hope you will read Cara's celiac info. It is probable that gluten sensitivity has not been ruled out.

rose

[rose]

I mixed up my response to the two posts, so my apologies to anyone who read my previous post before I edited it.

Lah,

How much time elapsed between the shot and the sample being drawn for tests? Did the amount of time differ?

rose

[cat265]

I was given a shot on 9/13/07. Unfortunatly I do not know how much he gave me. The blood test for celiac and lupus was done on 9/14. I take 3000mch of methly everyday, when Iam feeling really bad I have taken 2 X 3000mcg. He wants me to have a serum b12 repeated on 9/28/07.

I did ask him if the celiac test could be wrong. I asked if someone could have negative blood test but still be sensitive. He said sometime times yes, but usaually there is some indication shown in the blood work. He said my blood work gave him no reason to think I have celiac. Iam still not so sure about that.

I forgot to mention that Iam also now taking P5P b6 50mg 2 X's a day, magnesum taurate 125mg, zinc 50mg, biotin and r-lipoic acid along with the above b12. I think you (Rose) told me to take omega 3? Is it better to take omega 3 or the 3 6 9 form?

[glenntaj]

--I hope the celiac tests this doctor ordered include not only the anti-transglutaminase one, but also the anti-gliadin IgA and IgG tests.

The anti-transglutaminase test has been set as the more specific test--but it seems to be correlated, in true celiac, with the degree of villous atrophy of the small intestine. As such, it is likely it comes up negative and misses some people who are in the earlier stages of villous damage. The anti-gliadin tests are less specific, but more sensitive--and, in fact, there is some evidence that it may be the only abnormal test in the earliest stages, or in those whose primary gluten sensitivity symptoms are neurologic, not gastrointestinal.

Our gluten sensitiviy/celiac baord has a lot of info on this, especially in the Gluten File (well worth looking through):

http://neurotalk.psychcentral.com/showthread.php?t=1872

[rose]

Cat,

Unless you are very unusual, your B12 result will probably blow him away. And almost surely he will think that because your B12 level has increased so much you can't have pernicious anemia. And, of course, if he thinks that he will be wrong.

I hope you come back here with results so we can get some better idea of what is going on.

You might try giving him a copy of this article:
http://www.aafp.org/afp/20030301/979.html

Whatever dose he gave you probably doesn't matter. You are almost surely getting more over the long run with your oral dosing, and of course unless you are extremely unusual you are building (or have built) stores which will show in the test even if you stopped right now.

Please be sure to stop your B12 a few days before your sample is drawn for the B12 test.

Most people are low in Omega 3 because so many things in our modern diet now lack it. Mrsdoubtfyre/mrsd is the Omega 3 expert.

rose

[cat265]

Iam suppose to a wait another week or 2 before going for blood work for b12 serum. It is now almost 3 weeks form the first shot. I thought I did not feel any better from the shot but now I am think I was wrong. One week after the shot my vision started to get a little fuzzy. It has gotten to the point that it is interfering in work. Iam also getting that teribble tired feeling back and I feel dizzy alot. I had a parent teacher meeting tonight and really embarassed myself. I was stumbling over every word that came out of my mouth. I feel like nobody really gets it. I feel very much like Iam in an episode of the twilight zone.

[cat265]

I just read my first post over again, that and the last one sound the same. Only I feel worse so much worse. Iam actually very intelligent or aleast I was. One question I forgot to ask. If I was anemic or even boarderling for a very long time, dose that effect how b12 is absorbed in your body?

[watsonsh]

Get your iron checked too. I was low on B12 and took it for a while and still felt bad. I had my iron checked and boy was I low. Make sure they check your ferritin and your % saturation. I fixed it my taking and iron supplement with doc's ordes called Jarrow Ironsorb.

Good luck